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Issues with methylation/glutathione supplements

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by ajw13, Oct 25, 2013.

  1. ajw13

    ajw13

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    Hi i am a 28 year old male who is having issues with just about every supplement i have tried relating to the methylation cycle. I am slender built and have trouble putting on muscle. (My current weight is 63 kilos and i am 170 cms tall)

    So basically i started getting treatment through an ND about 1 year ago for numerous afflictions that were progressively getting worse over time. These being chronic constipation, bloating, distention, excessive sweating (More so over the past few years then when i was younger), smelly body odour, boils,skin rashes to just about everything, tiredness, mental blanks, slow recovery and deep cystic acne. An IgE test taken stated i was allergic to 60 foods out of 279.

    At first we looked at the treating the gut and that is working well now, we treated that first hoping it would be the root of the cause and ended up using a combination of good diet, l-glutamine, probiotics, gaba, dopamine and 5-htp to get it running again. I no longer have to take any of these supplements and i have regular bowel movements.

    However treating this i still had issues remaining such as deep cystic acne, boils, body odour, allergies(Skin rashes all the time, sneezing etc), tiredness, slow recovery and excessive sweating.

    So my ND has been narrowing it down and we got to Methylation, which clearly going by symptoms i was undermethylating. So anyway we went to treat that below i will write the supplements and the reactions.

    Methionine + choline - Irritated nerves, painful spikes that shoot up the arm or leg and in particular every time i moved my ankle forwards towards the ground i would got a shock from the ankle attachment up the leg. We stopped this, waited a few weeks and started it again. 2-3 days after starting it the same thing occured. Choline converts to betaine i have read, so it could be this.

    Sam-e - After 2-3 days i got headaches and stomach aches. I kept on it for 2 weeks and it got worse even though we lessened the dose. Allergies pretty much gone but the cystic acne got worse. Allergies came back about 3-4 days after stopping.

    TMG/Betaine(Beets as well) - Tingling in the hands and feet within 20 minutes of taking a supplement or eating beets. Stays tingling for a few hours and settles down. Over a few days it gets worse to the point where the nerves shoot pain up and down the arms and legs. I've taken 1mg before and i got crazy muscle fasciculations as well. You could visibly see my skin pop out.

    B12 - Does absolutely nothing except make my urine bright yellow. I took it for 3 weeks without any sort reaction or benefit.

    Methylfolate - Have not tried this yet, waiting on NTHFR results which should come in next week.

    Other supplements of note

    Zinc - This makes me break out like no tomorrow. Causes boils and deep acne cysts. I have tried this 4-5 times over the last 6 months with no other supplementation in 3 of those cases.

    NAC - This makes me tingle in the arms and legs as well within 20 minutes. I haven't tried a high dose of it because it feels like it will do the same thing as TMG.

    Blood tests (Extensive tests were done and also urine tests as well)

    Everything is normal (All levels of minerals including potassium, sodium, magnesium, calcium etc) except IgE which was double the normal level of a person my age.

    I pretty much react to anything with sulfur in it too. Epsom salts cause skin rashes and if ingested a huge headache. Sulfites do the same

    Whilst i was waiting for my ND to go over everything i was wondering if anyone has had these symptoms or if anyone has any ideas what could be going on.

    At the moment i am just a bit stuck on what i can try or do. It seems i have exhausted most of the options at the moment.

    Cheers!
     
  2. Freddd

    Freddd Senior Member

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    You appear to have produced severe B12 and folate deficiencies, methyltrap, via glutathione just as I did. However, after damaging my nervous system I realized what was happening and reversed it. NAC makes it worse too.

    So if you want to have a chance to heal you it's time to try something completely different. Stop what isn't working and start the ActiveB12 protocol. That's what cured me form CFS, FMS, congestive heart failure, glutathione/NAC induced methyltrap.

    Also B12 doesn't make the urine bright yellow. If you absorb several mg (maybe a 10mg sublingual dose held for 2 hours will produce lightly pinkish or darker yellow/orange urine color.
     
  3. caledonia

    caledonia

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    My suggestion would be to get complete methylation cycle testing, not just MTHFR. It sounds like you have some other gene mutations going on which will cause problems when trying methyl supps, unless you address those first. With sulfur issues, CBS comes to mind. Most of us get our genes tested via 23andme.com, then run the raw data through geneticgenie.org to pull out the methylation SNPs.

    If you still have allergies and rashes, I'm not sure if you have the gut problems totally licked. Did you do stool testing to see what kind of bad bugs are in your gut? Did you kill off those bad bugs? Unless you take specific action to kill off the bad bugs, they could still be in there causing problems. Just taking probiotics may not be enough to crowd out the bad bugs.

    Like Freddd is saying, it's better to take B12 and methylfolate than things farther downstream like methionine, NAC, etc. The B12 and methylfolate will convert into those.

    Check out the links in my signature, starting with the Methylation Made Easy videos.
     
  4. ajw13

    ajw13

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    Thanks for replying Freddd, i believe that if the mthfr test comes back as positive that i will go onto this treatment. Even if this isn't the case there is probably no harm trying it out as i can get the supplements cheap from iherb.

    Also i was looking at getting a 23andme test done to see if i have a defect in the C699T gene in particular. I have a real problem with sulfur in any form.

    Still good to hear someone else solving their CFS issues. I have fatigue issues, but they aren't as bad as CFS patients.

    Anybody else with similar experiences, it would be good to hear from you.
     
  5. ajw13

    ajw13

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    Ah thanks for the links! I was thinking about getting the 23andme test done, i am more convinced i need to get it done now. The gut problem is still an ongoing thing, i don't believe it is fully healed yet, i did get a stool test done and the report stated that i didn't have many bad bacteria, however i had low amounts of beneficial bacteria. Candida was reported to be negligible. Thanks for information anyway, i really hope i can track this down soon!
     
  6. caledonia

    caledonia

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    I've recently done stool testing and researched gut stuff. My gut is like yours, ok but low in good bacteria. The newest info I found suggests to take bifidobacterium, lactobacillus and s. boulardii, so I'm taking all three of those.
     
  7. ajw13

    ajw13

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    Yes i am taking those three already! That is what i was told to take by my ND.
     
  8. ajw13

    ajw13

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    Well i have got a 23andme test sent in a few weeks ago and should get the results in 2-4 weeks and i am going to start the active b12 protocol. The basic Mthfr test came back as a compound C677T and A1298C.

    I have all the stuff i need ordered from iherb and will be starting off slowly.

    I realise the b12 i had mentioned in the original post was not good at all, had cyanocobalamin, folinic acid and all the other b vitamins including nicotinic acid. (The only B12 you can find in Australia is cyanocobalamin, and it is literally in 100's of supplements)

    Originally i was hoping that fixing my gut would fix everything but i opened a whole other can of worms in the process, so hopefully i can get somewhere with this Active B protocol. Once again thanks for the information Caledonia and Fredd i will update this on progress and what i am taking once i start.
     
  9. Journeyman

    Journeyman

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    Hi AJW - I'm in Brisbane myself and also have the same compound heterozygous MTHFR (1298 and 677T results) as you... I just recently ordered a heap of methylation supps through iHerb - very cheap and reliable. Make sure you read up on the deadlock quartet just to make sure you have everything covered off, as well as the heartfixer article in Caledonia's links. I too am 172cm and 63kg.... However I don't have any problem with the methylation supplements like what you're experiencing. Perhaps I'm much further down the recovery path... mebbe time to look into coffee enema's to get rid of various toxicities. Not as difficult as it sounds: just buy an enema kit from the local chemist, some moccona on special at woolies and you're all set : )
     
  10. ajw13

    ajw13

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    Journeyman thanks for the post, good to hear from someone also in Brisbane suffering from gene defects, i am trying to follow the methylation protocol by fredd started up the protocol but have had to stop it twice already and goto lower dosages. Pretty much 500 mcg methyl b12, 200 mg methyl folate and around 1g adenosylcobalamin with l-carnitine fumarate every second day (Not sure if i need to balance the ratios better). Also i eat tons of food with potassium, have potassium supplements and also use endura magnesium rehydration formula (Potassium, magnesium, calcium and sodium) If i go to hard on the b12's i get tension headaches in the mornings.The methylfolate makes my heart race so i lowered the dose of that too.. I notice a little more energy but nothing massive on.

    Unfortunately i think there is something else going on here and am waiting on a heavy metals panel to come back along with my 23andme results (23 and me should be close as my brother who did his at the same time has got his yesterday. He does not have the a1298c gene and also doesn't have any of the health problems i have.
     
  11. Journeyman

    Journeyman

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    AJW, I'd say you've got a lot of healing to look forward to given the symptoms you describe from taking the various supplements. For me, for example, whether I take 20mg or 100mg of Zinc in a day makes absolutely no difference in terms of observable symptoms. I have, however, since replying to your post here in late November tried SAM-E along with the Deadlock Quartet. I started the quartet (plus TMG, and Vitamin D) on 8/11/13 and for the first time I added SAM-E to the mix on 29/11 and then once more on 1/12. On each of these days, taking just 200mg I noticed a slight tension headache and with everything else (diet/sleep etc.) unchanged I can fairly confidently say the change in feeling was purely the SAM-E. I also noticed genuine hyper symptoms showing too much concern for things that would not normally bother me so needless to say, and in line with Fredd's recommendation, only add the SAM-E as a final or near final step after addressing the quartet.

    I think thats awesome that you've got a brother to compare your test results with. I'd be so interested to know just how similar genetics between siblings actually is. What will be really interesting (and useful) is if the only difference between you and your brothers genetic profile ends up being the A1298C mutation. In which case you can quote this post when you give him a clip around the ear :)))) (for having an unfair advantage)

    The other practical beauty of this is that you can clarify your observations of diet/supplements with your brother as you improve yourself. This way you can learn faster, and in a more confident way what works and what doesn't. The most interesting thing for me lately has been learning about the additional and lesser known genes involved in folate metabolism such as MTHFS, FOLH1 and another I can't remember right now. Though they don't have definitive phenotypes in the same way that seems common knowledge with the more popular A1298C and 677T genes, I think its important to know. For example if you have MTHFS (pretty sure this is the one) then you will have trouble not only processing vegetable folates to their bioactive forms, but you may bind up the active forms that you're spending good money in supplementing. I'm pretty sure this is the one side of my folate genetics that is clean and thus it makes sense that I never feel worse for having had a 'garden feast'

    To check into these just bring up your 23&Me login, 'browse raw data' from the top right menu and just type in 'MTHFS' and 'FOLH1' in the gene field...

    Keep us posted on your progress and I'll reply to your PM shortly.

    Cheers
     
  12. ajw13

    ajw13

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    I finally got my results back from 23andme and i having troubles working out exactly what to do. I was on Fredds protocol for about 2 weeks then all my joints and muscles got tight and fatigued.

    I changed the amounts i was now taking

    Had to stop these as i was struggling to even ride 1km on a bike.
    1mg methyl b12
    1mg adB12
    400mg methylfolate
    800 mg carnitine fumurate.

    Still taking below
    Tons of potassium (Coconut water 1000mg, 500mg of supplements, 2 bananas a day, and other foods with it in them)
    500 mg Magnesium at night. Any more and i would live in the bathroom.
    Quercetin and bromelain for allergies.
    2x Probiotics and 1 digestive enzymes before each meal.
    2x 100mg phosphatidylserine

    I can't tolerate molydenum either, it causes my feet to get large rashes and i can't even bend my foot down, it sends pain back up my foot.
    Tmg still causes tingling in my hands/feet

    Does anyone have any suggestions?
     
  13. Freddd

    Freddd Senior Member

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    Yes, Did you compare your symptoms to the lists of induced potassium symptoms or folate symptoms most people get within a few days of starting those supplements?

    Version 1.2 12/08/2013

    Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

    There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

    IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

    Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

    Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

    Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.


    Group 2a - Both

    IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


    Group 2b – Either or both

    Headache, Increased malaise, Fatigue


    Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency

    These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

    Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.

    Old symptoms returning

    Angular Cheilitis, Canker sores,

    Skin rashes, increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips,

    Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

    IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

    Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


    Longer term, very serious

    Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily


    Group 4 - Hydroxycbl onset, degraded methylcbl onset, methylcbl after photolytic breakdown onset.

    Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
     
  14. ajw13

    ajw13

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    Thanks for the reply Fredd, I have read most of your large posts on the subject and i have tried pushing through with high levels of potassium and also increasing methyl folate after ramping up potassium. I felt ok for the first week then it started going down hill fast.

    I will attempt it again soon as i have been off it for around a week. I will write down observations for each day including dosages of each supplement and my potassium intake from all sources.

    Group 1 - sounds kind of like what i have but some things are not as bad as stated (I have stiff neck, stiff hands and feet. tingling sensation in calf muscles and forearms, tightness through legs and feet, back tightness and general fatigue.), however one day i really ramped up my potassium and it still got worse the next day. Then i tried ramping up the methyl folate to 800mcg for 2 days (2x what i was taking) whilst keeping the potassium high and it got worse again. This is when i couldn't even ride a bike 1 km. I had to get off them as i was travelling away fro Christmas. Once i got off the 4 supplements you suggested i went back to normal within 3 days. Though i still have stiff knees, which i haven't had before.

    Group 2a - I have been going normally lately, it's very much variable.

    Group 2b - Yes headaches but not every day, fatigue comes with the muscle wearkness and tightness.

    Group 3 - Hard to gauge as there are so many symptoms i don't have, however i do have a few.

    Group 4 - None.

    What i was wondering is if any of the 6 +/+ polymorphisms i have are causing issues when i try to get methylation running again. +/+ in CBS + 3 +/+ BHMT defects going by Yaskos information could cause some issues. Then again i have read that her information could be wrong, so i don't know.
     
  15. Freddd

    Freddd Senior Member

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    HI Ajw13,

    One other thing in looking over your post, a lot of people have found that coconut water does not works well as researchers have found it often doesn't contain as much as believed in nutrients.

    Some of the perceived stiffness is a just that, more perception caused by MeCbl and others.
     

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