Need help: Liver Pain from Methyl-B12 or Bentonite

[Karina]

Hello all,
I have been experiencing a lot of weird symptoms while trying to start methyl b12. My blood tests show that I have megaloblastic anemia, so I really need to replenish b12. The most concerning current problems are detox symptoms and abdominal pain, primarily below my right rib cage in the area of the liver, since starting sublingual methyl-B12. I was hoping my symptoms would subside as I continued treatment with B12, but the abdominal pain is not improving even though my other detox symptoms have lessened. I would greatly appreciate advice. I'll describe my situation more fully in the rest of this message if you are up to more reading.

This is my second attempt to start methyl-B12. My first attempt was carried out after following a very low sulfur diet ( < 30mg sulfur/100mg food) for two weeks (I am homozygous for CBS C699T). I stopped taking MSM when I started the low sulfur diet to furthur limit sulfur. I also started a sublingual 15mg zinc supplement the day before starting the low sulfur diet (I have high copper and low zinc). On the morning of the fifth day of the diet, I had about 4 hours where my mental clarity and cognitive function were the best they have been in 9 months. I started Sulfite XX that evening (molybdenum and manganese to help clear out sulfite) and have just finished a month and a half course of that. The 9th-11th days of the low sulfur diet were good days for me. I was actually able to eat 3 meals a day (I normally only have energy to eat one meal a day). But then I crashed on the 12th day. I started on 500mcg sublingual methyl-b12 as soon as the 2 week low sulfur diet was done.

The day after starting the methyl-b12, I took my morning meds (not including B12) and went back to sleep. I woke up that afternoon with a terrible taste in my mouth. Everything I ate or drank made the taste worse! I stopped taking B-12. The bad taste persisted, and a few days later I developed a spot of darker red/purple pigmentation in the middle of my tongue. It was not yeast or fungus. I discovered it after looking in my mouth on a night the taste had gotten especially horrendous. I started taking epsum salt and bentonite clay baths on the 5th day in with the bad taste to see if this was some sort of toxic dump triggered by the zinc and b12 combo. On the sixth day in with the bad taste, I stopped taking the zinc sublingual tablet to see if that would help. I took another detox bath that day and the taste was noticably reduced immediately after the detox bath. By the next morning, my taste was thankfully back to normal and the spot on my tongue was gone. I have not yet restarted the zinc.

I've been doing 1 week on and 1 week off with the low sulfur diet since then as maintenance and to see if more good days would happen. They havn't. I waited about 5 days after my taste returned to normal to re-attempt methyl-B12 starting 4/11. I started with just 1 drop (about 38mcg) a day and worked up from there. I was up to ~385mcg/day m-b12 by 4/16 and I attempted a bentonite clay and epsum salt bath. I was actually able to wash my hair (laying down) and felt less dizzy and drained afterwards than usual. It kind of felt like the detox bath was removing toxins and then allowing the b12 to give me a temporary energy boost.

I started getting burning nerve pains all over my body on 4/18, at which point I was up to 500mcg m-b12. I figured it was either the neuro issues I've been having (high intracranial pressure and chiari I malformation) or a result of m-b12. I found some other cases on line where people experienced nerve pain temporarily while correcting a b12 deficiency. Based on my blood work, I've probably been deficient for years. The nerve pain actually started as severe bladder pain, which then 'exchanged' for burning pain down the leg. When the burning nerve pain was less, the bladder pain got worse and vice versa. I stopped the B12 on 4/20 to see if the nerve pain would resolve. It only took a couple days for the majority of the nerve pain to go away, and things were back to normal by 4/25.

I restarted 625mcg m-b12 on 4/26 and had a really good energy day. Best energy day in about 9 months. I took 750mcg m-b12 the next morning and woke up in the afternoon feeling absolutely dreadful. The burning nerve pain was back, so that is definitely caused by the b12. I had lots of detox symptoms, like eczema, acne, and terrible body odor. My sweat actually smells like mildew/mold. After doing some reading, I'm wondering if I'm detoxing volatile organic compounds from mold, which are apparently the substance that give mold it's smell. Has anyone else experienced this?

I figured a bentonite and epsum salt bath might help if this was the result of m-b12 kickstarting my metabolic detox pathways. I had ordered a new bulk supply of sodium bentonite clay and used a couple cups of it in the bath (many times more than I had used in previous baths since I now had enough supply). Ideally, 1-5 pounds of bentonite clay is supposed to be used per bath. This was probably in the 1 pound range and I was careful to make sure bath temperature didn't exceed 100 degrees F. I spent about an hour in the bath and I was incredibly weak and shaky when I got out. I had to lay down immediately and couldn't even grab the rest of my things to bring with me from the bathroom to my room. I think I overdid it on the bentonite, which apparently can happen especially in sick people.

4/28 I woke up feeling awful with a lot of muscle pain and weakness/shaking when walking. My body odor was still terrible and my right abdomen and side under my rib cage hurt quite a bit. I also got pinching pain about 2 inches to the right of my belly button. I tried a kinesiology technique for closing the ileocecal valve so waste can't backwash and be re-absorbed by the liver (I learned how to do it on YouTube). I can't remember if I tried that before or after I started having liver pain. My guess would be after, since I found the technique while looking for ways to support my liver during detox. 4/29 I felt a bit better when I first woke up and took my meds, but I felt worse when I woke up again later in the afternoon (I took 500mcg m-b12 that morning). I had a lot of GI upset that day. I skipped b12 the next day and took a bentonite clay/epsum salt bath using less bentonite this time and staying in for about an hour. The bath made me feel a bit better. I restarted 500mcg m-b12 on 5/1. I noticed 5/2 that the b12 is making my teeth sensitive.

My body odor and eczema started to improve on 5/2 although they are still present. 5/5 through today 5/7, I have felt a subtle increase in energy, presumably from the b12. The burning nerve pain has mostly stopped, although there is still a very painful patch in my right calf that stings at random. I also have a ton of pain under my right rib cage/upper right quadrant of my abdomen. It goes from about belly button level up to just under my chest. If anything, it seems to be getting worse. I've also started experiencing a weird gurgling feeling that moves around my left chest, under my left rib cage, or just below my xyphoid process that syncs with my heart beat, but does not always coincide with the liver pain. I stopped taking the b12 today because this potential liver pain makes me think I might be damaging it. Any ideas why b12 would cause this? Or is there some way over-doing a sodium bentonite clay bath would cause this? That doesn't really make since though, since the bentonite should make this detox easier on the liver rather than harder, as it helps pull toxins out through the skin. I should also mention that I had a toxic metal urine test done before starting m-b12 and I had no mercury, lead, inorganic arsen, or arsenic. So it's unlikely that I'm reacting badly due to toxic metal mobilization, unless it's something we didn't tests for. Could it be my high copper levels? I don't think it's from the methyl group of methyl-b12 because I've taken methyl sulfonyl methane previously with good results. Any advice or knowledge would be greatly appreciated!!

 

[Learner]

It's likely you have multiple things going on, and throwing something new into the mix can upset the apple cart.

From your description, you likely mobilized something. Was the urine metals test provoked with a chelator, like DMSA, DMPS, or EDTA? If not, or if the correct chelator wanly used on the substances you have, your heavy metals could have been missed. Or, there could be other toxins, like mold, organophosphates, etc.

In any case, if you are toxic, you need to have all 3 phases of detoxification working properly. B12 is involved in Phase II.

B12 is just one nutrient used in the process of methylation. You need the other nutrient cofactors for it to work properly, and then you need glutathione to be produced and recycled and then your transsulfuration pathway to work properly as well.

It would be good to get comprehensive nutrient testing done, like a Genova Diagnostics NutrEval test that could guide you.

Without that info, you're just guessing. Things to try (in this order, as it works backwards to clear out toxins):

• Take benfotiamine or other active form of B1 and taurine to get the transsulfuration pathway going.
• Drink lots of water and eat lots of vegetables, nuts, etc. for fiber.
• Sweat, through sauna or exercise, if you can.
• Eat adequate protein, especially the amino acids, glycine, glutamine, and cysteine which are needed for glutathione production.
• NAC, n-acetyl-cysteine, will help boost glutathione production.
• Take Pyridoxal-5-phosphate, riboflavin, and magnesium malate or glycinate to support methylation.

Your dramatic reaction suggests a great deal of toxicity and significant problems in getting rid of it. You would be wise to find a good functional medicine practitioner to help you.or you may stress your kidneys and liver inadvertently. (I've had this happen, with kidney and liver pain, even with excellent medical supervision.)

Failing that, adopting a slow, steady detox protocol, with proper methylation and nutritional support in place would be useful.

 

[Not dead yet!]

I didn't see choline mentioned in this conversation so I'll mention it now. It was added to the essential nutrient list in 1998, but it is not yet a "vitamin" in the classic sense. The adequate intake per day is around 500mg, and they've found experimentally that fatty liver can be reversed (if caused by deficiency of choline) with a 2 grams per day intake. There is much more to the story. I suggest pubmed searches on this subject as it is still not in the mass media. For me, I've found the simplest solution is to eat liver. Easy for me to do, I love it. But if you don't, you may have to find a way or to use egg yolks instead. Both are high in choline. About 5-10x higher than cauliflauer (one of the veggies with the highest amount of choline).

I hope that Karina is okay and I would like to know how she's doing because I have a similar issue. Any time I try to kickstart my metabolism and / or detox, I get big reactions. I hope that choline is the key, but I will let my body stock up on it first before I attempt another detox.

PS: I use chlorophyll to keep body odor down. Also alfalfa supplements which last longer. I don't think it is cosmetic. When I started eating liver again, I had a big improvement in bowel movement frequency (not loose, just suddenly started "working" again). The smell was a smell of ammonia. That is terribly toxic to the body. The chlorophyll stopped it and my feeling of malaise also improved. This is not a coincidence, this happens to me each time my BMs get smelly, it is with a feeling of malaise. And chlorophyll not only stops the smell, it stops the malaise. For me. YMMV

 

[Merida]

@Not dead yet!
Very interesting! This sure suggests a specific metabolic issue. Think someone should start looking at everything we are 'throwing off ' in our urine. Bet patterns would show up. But this type of research doesn't have the 'cache' that researchers or funders like???

 

[ladybug64]

Is your ferritin elevated? I have the liver pain, too, along with elevated ferritin--finally found out I have iron building up in my liver due to heredity hemachromatosis .
Also like you, I have the horrible burning pain--was recently diagnosed with advanced Small Fiber Neuropathy proven by skin biopsys (Therapath is test company name).

Hope this info helps you!

 

[Merida]

Forgot to mention porphyria. Check it out.

 

[dejurgen]

I started on 500mcg sublingual methyl-b12 as soon as the 2 week low sulfur diet was done.

The day after starting the methyl-b12, I took my morning meds (not including B12) and went back to sleep. I woke up that afternoon with a terrible taste in my mouth. Everything I ate or drank made the taste worse!

Note: We can taste but very basic things like salt, sour, sugar. Near all other tastes / flavors we experience are actually the effect of smell rather then taste by the tongue.

I took 750mcg m-b12 the next morning and woke up in the afternoon feeling absolutely dreadful. The burning nerve pain was back, so that is definitely caused by the b12. I had lots of detox symptoms, like eczema, acne, and terrible body odor. My sweat actually smells like mildew/mold. After doing some reading, I'm wondering if I'm detoxing volatile organic compounds from mold, which are apparently the substance that give mold it's smell. Has anyone else experienced this?

From https://www.healthrising.org/blog/2...mation-fibromyalgia-chronic-fatigue-syndrome/
another person wrote:
"
For the past 13 years, there is a strange odor in my room. It’s from my sweat, what lingers behind on bedsheets and clothing. I have to constantly wash them. Sometimes it is so bad, it reaches out into the hallway.
It’s noticeable to others. No one can describe it. I think it’s simply foul.
Recently, others can even smell it on me, when I got back home from being outside. It waxes and wanes.

There was a dead mouse in the shed, and something about the smell reminded me of the smell in my room. I looked up what is the substance responsible: sulphur, methane from the body decomposing (the mouse’s, not mine)

Started noticing it only in the last 13 years.
... ...
I experience the night sweats. Also, the ammonia fumes escaping with my sweats. In fact, a couple of days ago I had a small chicken liver, and two-three hours later, I sweated a bit and the ammonia choked me a bit. Sometimes it stings my eyes. What could this be pointing to?"

Both seem to point to:

Trimethylamine N-oxide - Wikipedia

en.wikipedia.org

"TMAO is a product of the oxidation of trimethylamine, a common metabolite in animals. TMAO is biosynthesized from trimethylamine, which is derived from choline. "

As TMAO is *full* of methyl groups, and methyl B12 is a good methylation product, both are related.
"
Choline and vitamin B12 deficiencies are interrelated in ...
https://pubmed.ncbi.nlm.nih.gov/11833752/
Choline, a methyl donor in the metabolism of homocysteine, is intricately related to folate status, but little is known about choline and vitamin B12 status. Long-term TPN patients are also subject to vitamin B12 deficiency."

The problems with TMAO are:

"TMAO decomposes to trimethylamine (TMA), which is the main odorant that is characteristic of degrading seafood. "
Rotting fish smell isn't that far from a very strong and bad smell or rotting mouse smell.

"
Choline - Health Professional Fact Sheet
https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/
High intakes of choline are associated with a fishy body odor, vomiting, excessive sweating and salivation, hypotension, and liver toxicity [ 1, 2 ]. Choline consumption has been shown to increase production of TMAO, a substance that has been linked to a higher risk of cardiovascular disease, in a dose-dependent manner in adults."

It isn't a healthy substance either:
"
Hypertension and thrombosis
It has been suggested that TMAO may be involved in the regulation of arterial blood pressure and etiology of hypertension[23] and thrombosis (blood clots) in atherosclerotic disease.[24] A 2017 meta-analysis found higher circulating TMAO was associated with 23% higher risk of cardiovascular events and a 55% higher risk of mortality.[25]

Notably, toxic effects of TMA were described in several clinical and experimental papers in the early 20th century[26] and very recent studies show deleterious effect of TMA on the circulatory system."

As I am a strong believer that a compromised poor circulatory system plays an important role in (most cases of) ME, that isn't helping.

Sources of trouble:
"
Background
The concentration of TMAO in the blood increases after consuming foods containing carnitine[17] or lecithin[16] if the bacteria that convert those substances to TMAO are present in the gut.[18] High concentrations of carnitine are found in red meat, some energy drinks, and some dietary supplements. Some types of normal gut bacteria (e.g. species of Acinetobacter) in the human microbiome convert dietary carnitine to TMAO. TMAO alters cholesterol metabolism in the intestines, in the liver, and in artery walls. In the presence of TMAO, there is increased deposition of cholesterol in, and decreased removal of cholesterol from peripheral cells such as those in artery walls.[19] Lecithin is found in soy, eggs,[18] as an ingredient in processed food, is sold as a dietary supplement, is used as an emulsifier, and is used to prevent sticking (for example in non-stick cooking spray). "

Trimethylamine - Wikipedia

en.wikipedia.org

"
Trimethylaminuria
Main article: Trimethylaminuria

Trimethylaminuria is an autosomal recessive genetic disorder involving a defect in the function or expression of flavin-containing monooxygenase 3 (FMO3) which results in poor trimethylamine metabolism. Individuals with trimethylaminuria develop a characteristic fish odor—the smell of trimethylamine—in their sweat, urine, and breath after the consumption of choline-rich foods."

=> So there seem to be two main sources:
* A) a genetic disorder not breaking down TMA in the blood, creating excessive amounts that are "expelled" out of the body (including evaporating very smelly stuff).
* B) Several undesired gut microbe species dominating the gut that produce copious amounts of TMA / TMAO from foods rich in choline, lecithine, carnitine, and plausibly methyllation donors / products like methyl B12.

Note 1: that may explain why oral methylation products like methyl B12 and methylfolate may work differently then other methods of administration (potentially highly inflammatory by these gut microbes converting it to TMA / TMAO versus potentially beneficial and anti-inflammatory).

Note 2: as Issie says: we are often having cravings to things that are bad for us. I first found that illogical, but later adapted that to "those damn bad gut bacteria learned to drive our bodies from the coach to the cabinet with food they like". As there is a strong connection between gut and brain and bacteria have a strong influence on our neurotransmitters, they sure should be able to create cravings to their desires.

Chicken liver for example IMO is high in both choline and carnitine.
from https://nutritiondata.self.com/foods-000144000000000000000-w.html :

Liver ranks very high in choline content. Only eggs (yolk and fish roe) top it.

"
Management of elevated levels

• Vegan and vegetarian diets appear to select against gut flora that metabolize carnitine (in favor of other gut flora more coordinated with their food supply). This apparent difference in their microbiome is associated with substantially reduced gut bacteria capable of converting carnitine to trimethylamine, which is later metabolized in the liver to TMAO.[17]
• Molybdenum containing enzymes exist in mammals. The so-called mitochondrial amidoxime reducing component (mARC) has been found to exist in two isoforms, mARC1 and mARC2, both being capable of reducing a variety of N-oxygenated compounds, including nonphysiological N-oxides.[31] Green peas and black beans are believed to be among the richest food sources of dietary molybdenum.
• 3,3-Dimethyl-1-butanol (DMB), a structural analog of choline, inhibits microbial TMA formation in mice and in human feces, thereby reducing plasma TMAO levels after choline or carnitine supplementation.[13] It is found in some balsamic vinegars, red wines, and some cold-pressed extra virgin olive oils and grape seed oils.[13]
• Resveratrol has been shown to reduce TMAO in mice by remodeling gut microbiota.[32]

"

=> If anybody affected by this finds good differences in symptoms by implementing dietery changes and supplement changes, please report results.