panicky and having suicidal thoughts after 2 months of unsuccessfully addressing methyl trapping

[Gondwanaland]

I doubt potassium is the culprit, Ford.

If he is in pre-acidosis state, potassium is harmful. He is probably dealing with a lot of ammonia, which is very acidifying.

 

[fprefect]

i am not thinking clearly enough to respond to all posts.

the added 400mg of potassium seems workable for now, with caveats.

• tinnitus seems worse. not sure what is causing this as documented culprits of zinc, b12 and magnesium (i think) make this worse rather than better. i suspect some increasing deficiency.
• unclear whether added potassium is causing added allodynia.
• think it improved mild cramps, but also made them worse, presumably by reducing sodium.
• touch wood, but i think it might have improved mental clarity a bit.

i will probably try balancing sodium and potassium next, by adding 15mg sodium and then adding 135mg potassium or more till mental clarity increases back to where it was.

Centrum?! Try some sawdust instead, @fprefect ! I had a colleague in nursing who informed me that those "come out exactly the way they went in" - i.e. they go totally undigested. Far from being a one-time anecdotal thing, Centrum often shows up on 'worst vitamins you can buy' lists.

Getting a better multi = high on the list. Perhaps others could recommend? I take so many tiny doses here and there that I actually have pretty much everything covered without touching a multi... however, I did find these people. Maybe someone can speak to their experience with Pure Encapsulations if they've used them before?

[Edit: if your sensitivity is to the Centrum pill, that may be due to one of the fillers or colorants they use rather than to the vitamins themselves. Though perhaps you're taking a separate B12 and we're talking apples and oranges.]

-J

@JaimeS, sorry about the delayed response.

haha .. nice image with the sawdust. i am not impressed with the centrum. however, i am currently quite sensitive to it, which i thought was due to the ingredients. specifically, the folic acid. i hadn't considered the fillers.

do you think there is some deficiency a different multi would address better? i am not trying to be abrasive. i am just trying to understand since i am not thinking clearly. wow. you must be taking *a lot* of tiny doses! sounds like a big hassle. i did try searching for a replacement, but with no/very low folic acid/methylfolate (due to my presumably poor b12 status). the only such animal i spotted was Yasko's multi with 25mcg folic acid/folate, of which i can't tolerate even 1/800 of a pill. if you know of a suitable product, i'd be open to testing it so i can get off the folic acid/folate in the centrum.

hmm. i take 50mcg of enzymatic therapy methyl b12 and 45mcg of Yasko's adenosyl b12 drops. i don't count the b12 in the centrum since i don't take it sublingually and i expect my intrinsic factor is messed up.

Ford

 

[fprefect]

i am still not thinking clearly enough to respond properly.

Please be careful with DMSA or DMPS. Chelation for Mercury. Everyone is so different but it totally messed me up big time. EDTA, too. You need a lot of vitamins in you to handle it.

I did tons of IV minerals to be able to handle it.

Yes, Centrum is crap. There are other better multis out there. Anything you can buy in a grocery store...stay away from.

Agreed. Those meds knocked me on my a$$. DMPS caused me to go to the ER. I was so weak and sick with heart flying. Sweating....ugh. No way.

hi @Misfit Toy.

thank you for the reminder. sorry about the delayed response. actually, i don't recall anyone who hasn't had issues chelating. i am sorry you had such a rough time on it.

i need to figure out how to sustainably stop 600mg ALA first before chelation.

i haven't found any multi with low/no folic acid/methylfolate (due to current methyl trapping) other than Yasko's and i can't tolerate that.

Agree. The person must be well in order to start chelation. Adrenals and thyroid must be 100% working, and minerals well balanced.

@Gondwanaland, that sounds sensible given my current state. this is a complicated web since mercury is messing with my minerals and possibly adrenal function. i want to test for low aldosterone first so i can try to balance sodium and potassium first. not sure what to do about added allodynia and possibly added tinnitus from potassium though.

I would get away from folic acid. I know from personal experience that it can interfere with the methylation cycle in some disastrous ways. Within an hour of taking it, I was in a nightmare land.

I ran out of l-methyfolate, you see, and on my doctor's advice that folic acid was just as good, used it instead, and -- bam! Dark lands here I come. It was awful. Three days of hell.

That was 11 months ago. I won't touch folic acid ever again. My research and personal experience tells me that, for me at least, it's a disaster. Maybe for you, too. Consider getting off it.

hi @aturtles.

sorry about the delayed response. i can empathise with being in a nightmare land. i am glad you got out of it. i am trying to stop folic acid, but i seem dependent on the b vitamin drink (berocca performance) it comes in. i am trying to figure out how to reduce berocca without added (unacceptable) symptoms.

it would be nice if some doctors' visits came with a money (and time and energy) back guarantee.


Ford

 

[fprefect]

i am not thinking clearly enough to respond to all posts.

i meant to trim the caveman beard due to the increased allodynia bugging me, but only by 1/3 due to low mental clarity that usually appears when i make the allodynia worse (by trimming the beard). oddly, i trimmed twice as much in a shorter amount of time and mental clarity didn't decrease as much. i'm not complaining, but i'm wondering if stopping the rye bread (has oxalates, gluten and prebiotics) made this difference or something else resulted in this.

Ford

 

[fprefect]

i am still not thinking clearly enough to respond. i am feeling worse today, probably partly from PEM after trimming 2/3 of the beard.

Ford

 

[fprefect]

i am still not thinking clearly enough to respond properly.

not sure whether completely over the pem. i've had bags under my eyes yesterday and today. not sure if this is due to stopping the rye bread previously. someone on PR noticed bags under their eyes decreased from stopping a probiotic. perhaps this is similar? ie. some change in gut bacteria.

more sluggish after methyl b12 dose was on large side. not sure what to do about my sensitivity to dose changes (1mg change of tablet weight) being smaller than the error on my weighing scale (3-5mg). i would use a dropper instead, but they seem even more inconsistent. any ideas?

Ford

 

[fprefect]

i am still not thinking clearly enough to respond to all posts.

in order to improve mental clarity, i am torn between testing a low oxalate diet and addressing adrenal function / salt and potassium intake. my OAT from last year showed oxalates at 5x normal. however, quite aside from dumping, the diet sounds like it would change my supplement requirements, including magnesium and zinc, which would probably make the methyl trap worse. on the other hand, cashews make the mental clarity worse. adrenal function seems simpler, but perhaps less effective and will increase tinnitus and reduce mental clarity till i figure it out.

I really don't know much about orthostatic intolerance, but your comments on salt interest me. Before discovering this forum, I spent a lot of time on Bee Wilder's site called Healing Naturally. She healed herself using diet, basic vitamin supplements, and self care modalities like skin brushing and coffee enemas, and the basic food stuffs she added to her diet were Coconut oil (which frankly I love, but never could get above 2 tablespoons a day before my heart began to pound nightly), a tablespoon of lemon juice in water with meals to aid digestion, and a lot of SEA SALT, again to aid digestion--it apparently increases stomach acid that many of us lack--and to support adrenals.

So some of these things I've brought along with me for the ride. I do believe that sea salt is a better product than basic table salt. It has many, many natural minerals in it that are helpful to the body. Its only drawback is that it doesn't have iodine in it and over two years of using it, I developed an iodine deficiency (Oh, the places we go with our healing efforts!). The physical stiffness that I experienced as a symptom of iodine deficiency was corrected by a very low dose--225 mcg, I think the RDA, only 3 drops--per day.

So Celtic Grey Sea salt has been in my pantry for years and I use it liberally. In fact, while I don't drink an electrolyte drink per se, I do drink a lot of water and add 1/8 of a teaspoon of sea salt to each liter so that I maintain my sodium levels (which have been problematic in the past).

This said, I know that potassium and salt are rivals, and keep my potassium supplementation,when I do take it, separate.

This is my salt story.

@Kathevans, sorry about the late reply. i haven't been thinking clearly. thank you for the ideas.

i've been wondering if coffee enemas might make the methyl trap worse. i would like some kind of oil, but as of 2 or more years ago, tiny amounts resulted in mental clarity dropping quite a lot for a few hours. no idea why. my CSA from last year showed digestion/absorption within normal range, surprisingly. i expect that has changed though.

bummer about the iodine deficiency. we don't seem to appreciate the automatic balancing act our bodies do till we don't have that. i am hopeful we will all get back that balance eventually. i am making a list of tests to (re)do. iodine is now on the list.

the salt i use is (a crappy) sea salt, which includes anti caking agent and no mention of other electrolytes. i don't know if this is better than the added variables from a sea salt with other electrolytes.

i would like to take salt separately from potassium, but my potassium intake is spread out through the day and i don't know if i can tolerate more potassium at 1 go. perhaps i should test.

Ford

 

[fprefect]

in other news, i am still too low on mental clarity to respond to all posts.

i wonder if the panic is messing with my decision making by making me more wary of everything.

Methylfolate production? I was getting from 200-800mcg in the multi B-complex I was taking(was actually taking the full 800/day for years before I realized it was exactly what was causing so much pain)--and have stopped as of three days ago. After increasing the amount first to try for more sleep, which worked for 3 days before going in the other direction... Like you (I think it was you earlier in this post!), it then took 3 more days for the folate to lower enough in my system that I could sleep again. But still not well.

I'm still increasing the D, but only by 100 mcg or whatever the amount is, per day. I'm hoping that helps somewhat. And today I took one of Dr. Ben Lynch's B-Minus, a B-complex that has no methyl donors in it. We'll see how that works.

Unfortunately, I've added an extra and often very disrupting variable today by doing some cleaning around the house (despite my exhaustion, I felt I was living in a pig-sty...) So, on one hand if I clean a little, it can give me a deeper, sometimes longer sleep; whereas if I push too hard, I can end up being up half the night. We'll see!

I think I must sound much less in control of all that is happening to me at this point, which is exactly how I feel. I know that what I need is more of the B-12 for the pain, but also like you, have had a hard time tolerating it. I ran a test a few weeks ago of 1/4 sublingual for 5 days and slept less and less. I think my next move is to go to either 1/8, or even 1/16 and see if I have any reaction. I won't push for so many days this time. I'm too exhausted for that kind of experimentation.

@Kathevans, i was referring to your producing methylfolate from dietary folate. with low b12, that could cause pain too. i can empathise with the frustration of discovering years down the road that something you thought was helpful was making things worse. how did the added folate mess with your sleep? more pain or you felt less rested even without pain?

i hope you got away with the cleaning. my room is a mess also. cfs makes for a good excuse for that. at least it is good for something!

if you haven't already done it, assuming you have other vitamin/mineral supports in place, i suggest even smaller doses of b12 until you find something that doesn't keep you awake. touch wood, but i tolerate about 47-50mcg without waking extra and it helps with pain somewhat. 53mcg wakes me up more. i am hopeful you'll get there and find a dose that works for you.

Ford

 

[Kathevans]

Actually, after fiddling around with the B-Minus, I stopped that, too, and have reverted to the very low B-complex by Nature Made. Initially, I tried adding extra B6, but simple Pyridoxine and then p-5-p and realized in short order that it was giving me a delayed anxiety reaction, perhaps even worse with the p-5-p, so I stopped it. I'm really trying to just slow down. It was clear from my recent blood work that the only B I was low in was actually B3, Niacin, which she told me to supplement at 100 mg /day. Not so much--though there is another 50 mg of B3 in the B-complex. The over-methylation that I'm pretty sure has been chugging along and tying me in knots may be easing a bit, but I'm going to try to sit tight and just observe. I'm slowly increasing my Vit D. That's about it.

As for the folate in food causing pain, perhaps. I have been having a low-grade headache at night. But my sleep is better than it was even a week ago--though this isn't saying much. I did read on another thread that someone had great success with Adeno B-12 and I'm going to go back to some of Freddd's posts. It seems to me that pain syndromes with soreness at the points where the muscle attaches to the tendons may benefit form this. I need to do more research.

I know B-12 is what I need. And I'll get there. For the moment, I'm relieved to be off the B-complex that was causing so much over-methylation for so many years, and trying to slowly increase some co-factors. For now I'm going to stay away from anything that strongly effects methylation--like the Methyl- B-12 and the Methyl Folate.

The exercise actually helped my sleep, so I'm trying to move around more even if I'm pushing. And the epsom salt baths always help with both pain and relaxation.

Sleep tight!

Kathleen

 

[fprefect]

i'm still not thinking clearly enough to respond properly.

i guess i will slowly try a low oxalate diet, mostly since i'm not thinking clearly enough to think of anything more feasible for now.

A RBC panel will essentially tell you about anemia. Anemia causes brain fog and body aches.

WBC panel tells you about active infections and antioxidant status.

Iron panel tells you about anemia, it can confirm or lead to other clues

Thyroid is all about mental clarity and cognition

PCR and lipid panel can tell you if your food is hurting you (going gluten free and lowering carb intake improved my results - note: I do not eat a low carb diet, but learned to balance carbs, fat and proteins)

ESR can confirm infections (unespecific)

@Gondwanaland, thank you for putting this in a form even i can understand in my current state. i added your list of tests to my own list. hopefully, i can move on that in a few weeks when i am waking nearer everyone else's lunchtime.

Ford

 

[Gondwanaland]

i guess i will slowly try a low oxalate diet, mostly since i'm not thinking clearly enough to think of anything more feasible for now.

This must be transitioned slowly, otherwise you can get worse.

I think you are taking the wrong supplements or wrong doses. Whenever I take a supplement that makes me feel worse, I stop it.

I am sorry you aren't feeling better yet

 

[fprefect]

i am still not thinking clearly enough to reply to all posts.

allodynia was better and then worse than yesterday. mysterious.

I think @ahmo had that once

@Gondwanaland, thank you. i wouldn't have found her post again myself.

I didn't experience decreased padding. I was having pain in the ball of my foot, which pointed to stressed kidneys. Could it be that you're dehydrated?

@ahmo, sorry about the very delayed response. i haven't been thinking clearly enough to respond sooner.

thank you for this distinction. this dull pain is in the flesh below the ball of my foot. it isn't present near my toes. i am not sure whether it is decreased padding. was your pain inside the ball of your foot or in the flesh below it? i am glad you had some idea of the cause. how did you deal with it? my lips do seem dry sometimes. i think i am dehydrated. i am not sure this foot pain correlates with dry lips though. i know added b12 seems to make this worse, but i depend on that to reduce pain.

Ford

 

[ahmo]

this dull pain is in the flesh below the ball of my foot. it isn't present near my toes. i am not sure whether it is decreased padding. was your pain inside the ball of your foot or in the flesh below it?

If I interpret your question correctly, the pain was inside the ball of my foot. I experienced it when getting out of bed first thing. Can no longer remember if it lasted through the day. How did I deal with it? I'd have to go back through my notes of the time. I've been using herb Chanca Piedra for several years, as needed. It helps w/ gall bladder, liver, kidney. This is what I used, though there are other brands. I would have asked my body, through self-testing, whether it wanted more or less salt, water.

I don't know why this would be associated with B12. I know B12 can stimulate nerves coming on line again, which could maybe cause the symptom. My general practice over the last 2 years has been to use coffee enemas to detox liver, thus clearing the pathways for gall bladder and adrenals, and presumably kidneys. I eventually reached a point where my body is detoxxing itself without the need for CEs.

If you want to pursue self-testing, below's a really simple method. It's been an invaluable ally in my healing. Hope you're feeling better, that your reply indicates your head's a bit clearer.

Self-testing http://www.youtube.com/watch?feature=player_detailpage&v=Ex59wHLk3Q0

Good written description of simple self-testing: http://www.goodhealthinfo.net/herbalists/muscle_testing.htm

 

[fprefect]

i am not thinking clearly enough to respond properly.

mental clarity is significantly lower today, partly due to some food.

i will probably try reducing 1/16 of my (very high) oxalate intake soon.

Ford

 

[Kathevans]

Ford,

It's easy to become overwhelmed here with so many offerings on how to improve our troubled bodies. I, too had very high Oxalate levels on my OAT Test this spring, even after lowering my Oxalate intake significantly. I'd been eating a very high Oxalate diet--lots of nuts, Swiss Chard, sweet potatoes, dark chocolate, spinach-- and I was in a lot of pain. I'd gone to a new rheumotologist last November and all he had to offer was a diagnosis of arthritis, and prescriptions for pain killers and muscle relaxers. It took a new alternative doc to ask what my diet was like, and he was the first to mention oxalates to me...

It's been about six months now that I've radically lowered these foods and my pain levels have improved. Follow some of the threads of @alicec for very intelligent advice on oxalates. Experts say not to decrease too much too fast, though I admit my intake dropped pretty significantly. I believe one of my greatest culprits was the nuts. And you talk about your cashew intake...perhaps that's a place to start.

My brother is so sensitive to oxalates that he notices an increase in pain levels within hours and certainly by the next day when he consumes either nuts, or gluten, another pertinent issue in my family.

Sometimes simple changes to our diet can make an enormous difference.

It sound as if you're having some good evaluative tests done, so I'm assuming you can work with your doctor. I hope your own insights based on how you're feeling can contribute to your collaboration.

Don't feel you need to reply to anything I have to say.

Just take heart and take care.

 

[fprefect]

i am still not thinking clearly enough to respond properly.

i am probably going to slowly move from foods with unknown oxalate content to foods with known content. hopefully, they are not too different. i am also considering reducing oxalates a bit faster initially as a test so i can identify oxalate dumping symptoms. hopefully, i can stop that dumping with some high oxalate food. this might help identify which changes in symptoms are due to dumping and which are not. i don't know if this is a good idea.

Ford

 

[Kathevans]

At the time I thought I could identify oxalate dumping as rather sandy diarrhea--and it may well be. But some of my bowel problems are undoubtedly also from the paradoxical folate block. Unfortunately, it's not always easy to parse cause and effect. If you join the "Trying Low Oxalates" forum on Yahoo(which takes a few days as they want to ok you), there's an amazing file that's a Sorted Oxalate Spreadsheet. It has just about everything on it. I keep it on my desktop to refer to whenever I need to. Over time I've gotten familiar with the foods that I eat most often. Good luck with this.

K

 

[fprefect]

i am still not thinking clearly enough to respond to all posts.

i was significantly less rested today, but finished some things faster. not sure why. i think i am still seeing the effects of stopping the rye bread.

I was re-reading the thread No Love for B2 today and found interesting info there. It is pretty intricate, but roughly you need B1 with B2 because B2 lowers serotonin.

But in my current approach with having anemia, I can say that my supplementation is working great for me because I am covering (almost) all bases to increase red blood cells by taking B1, B2, B6, and copper with zinc. I am assuming my high serum iron is becoming bioavailable, because my brainfog and body pain are gone. Folate and B12 are also needed, but I am getting them through food since they are high in serum.

I am also taking B5 and B7 because at the same time I am addressing dietary oxalates, and every now and then I take some B12. I know at some point this regime will stop working, and then perhaps I will retry methylation.

It just seems that I am deficient in so many things, but I feel better addressing it in parts.

@Gondwanaland, sorry about the late reply. thank you for the summary. i never finished that b2 thread due to low mental clarity. my b1 status is an unknown since i haven't found a way to test it. berocca contains 15mg though.

i am glad you are feeling better using your approach. i will come back to testing and possible anemia once i am moving adequately on the low oxalate diet.

my b5 was high and b7 was low on the oat test from last year. i should probably test supplement changes to handle dumping better, when it does happen. i think your expectation that the regime will stop working is a useful one. that way, it is slightly less frustrating when things don't work. i'll try to adopt this.

i am also deficient in many things, but haven't found the right parts to address yet.

Ford

 

[fprefect]

i am not thinking clearly enough to respond properly.

more beard trimming. mental clarity lower. expecting PEM to show up tomorrow.

@Gondwanaland I didn't know that B2 lowers serotonin. Interestingly, the only B that I seem low in on my recent basic labs was B1, Niacin! My doc is now having supplement with 100 mg/day and I've been taking it at night because it does make me sleepy (not to be confused with putting me to sleep).

A little l-tryptophan helped me two nights ago to achieve a lovely (for me!) night's sleep, but last night I doubled my evening magnesium to 300 mg, which I think was a mistake. I actually felt anxious through the early hours of the night. I've been trying to trouble-shoot nightly headaches that are pretty much gone in the morning, and this may be the problem, or a contributing factor. Was it @ahmo who has said that magnesium competes with potassium? I've been taking extra niacin for the slight PVCs that I experience, but it would be better to eliminate the symptoms...

Btw, I have stopped the infamous B-Complex that was causing the methyl trapping, and have been taking the very, very low dose Nature Made, which has no folate or B12. I'm trying to get these through diet for the moment, as well. I am thinking of doubling the tiny dose of Bs or to begin by simply adding some B6 which Sherpa has pointed to as great for sleep/dreams...not to mention important for those high oxalates many of us are working with.

Doing more than one thing at once has only gotten me tangled in symptoms, so I'm trying to take it slow. The Bs very slowly...and a bit of L-tiptop ham for that all important sleep--and with thanks (and let's face it, a bit of envy!) to @aturtles I think we all know how important methylation is. If only we could all dive right into that pool!

But since I seem to have issues with taking potassium just now--makes my kidneys sore--then perhaps I'll stick with addressing some of the gut issues, along with the lower Bs.

@Kathevans, you stopped the b-complex causing the methyl trapping! sweet! congratulations on not going backwards daily. i hope it is sustainable.

i say. that l-tiptop ham sounds quite spiffy. i love autocorrect.

i am glad you are sleeping a bit better.

Ford

 

[fprefect]

i am not thinking clearly enough to respond. having pem.

i might be seeing some dumping symptoms from previously stopping the rye bread. for the previous 2 nights, mental clarity and headache have improved a bit after eating cashews. not sure about today though. previously, cashews made the mental clarity worse.

Ford