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

[Gondwanaland]

since it is usually yellow,

I think this means poor bile flow / production. Things that help making bile are glutamine, glycine, cysteine, taurine. You might not tolerate some of them.

how are his fodmaps intolerances?

Right now he refuses to eat anything from the plant kingdom

i am *still* trying to make the custom b complex.

The other day someone posted a link to a low dose B complex:
https://www.pureformulas.com/biob-100-180-tablets-by-biotics-research.html
I don't know how good or bad it can be, but definetly the good thing about it is that the dose is divided in 3 tabs, so you can start really low with it, plus the vitamins are coenzymated - except for B9 which is the folinic form (at least it isn't folic acid).

i suggest going over Ken Lassesen's wordpress site on cfs and gut function.

Thanks, will look it up!

i wonder if i should replace the magnesium oil with magnesium glycinate.

I personally found that magnesium is a very individual issue.

i have to find a different form of potassium i can tolerate, whatever that might be.

I don't tolerate any supplemental potassium at all.

i am wondering if magnesium sulfate is a good idea.

My advice is start really low with it.

i will try to come up with a prioritised list of tests.

In you place I would do a lot of tests. Full thyroid panel, OGTT+insulin assay, homocysteine, full blood panel, iron, ferritin, kidney, pancreas and liver panels, vitamin D, B12, B9 - like a blood donation for tests

 

[fprefect]

i am too low on mental clarity to reply. the suspected anemia is also somewhat worse. i think i accidentally took too much zinc.

i will try to reply again tomorrow.

Ford

 

[taniaaust1]

i am low on energy and can't respond very well.

therapy appointment turned out a lot less helpful than i expected. therapist, who i previously got along well with, got angry with me due to a miscommunication, in turn due to my low mental clarity and panic. now he doesnt want to see me again. oy. haha .. when the dude you are paying to listen to you won't listen to you due to your symptoms, it is no wonder social isolation is common in cfs.

Ford

very sorry to read this. I myself have had bad experiences with some therapists, one of them due to his lack of understanding of ME/CFS and my issues tacked a borderline personality disorder diagnoses onto all my health stuff and once there is hard to get off the records and now causes people I see to judge me more and my issues get more ignored due to that

I tried to commit suicide after ringing a suicide line as the one on other end set me off more due to her lack of understanding of ME/CFS and her telling me to go and do a ton of stuff Im not capable of doing so she made me feel even more hopeless.

I strongly suggest to try to find a counsellor who has a very good understanding of ME/CFS so to avoid bad experiencs with these as a bad one can be quite harmful (hence i wont tell people to ring suicide lines). I found a good one of those by ringing my local ME/CFS society (my ME/CFS society is a good one) and asked them for counsellor recommendations.

 

[fprefect]

@Gondwanaland, sorry about the absurdly late and long reply again. i am not thinking clearly.

Hey, that is an interesting explanation!

that is one of the problems with oxalates. it creates nutritional relationships that don't otherwise exist. ie. i take substance 1, which increases oxalate circulation, which then decreases substance 2 that combines with oxalate. so it appears as though substance 1 decreases 2, except that might not happen without the oxalate, and it might not happen after an initial dumping period. i wonder if that applies to you.

I haven't tolerated zinc for a long time now. It causes me anemia and increases DHT conversion from Testosterone. Yesterday I read somewhere about citrate interfering with ceruloplasmin and causing low copper issues.

oh dear. i can empathise with the zinc issue. i didn't know that about citrate messing with ceruloplasmin. thank you. my citric acid reading from the organic acids test was more than twice the upper limit in 2014. maybe it is causing the low copper. it seems moot since i can't increase the copper without diarrhea and yellow stools (presumably it decreases b1 which causes increased oxalate production and decreased taurine).

I have stopped tolerating minerals one by one. Right now I have all of them in separated capsules, except for Zn + Cu together, but I can't take it either because any supplemental zinc is too much zinc for me, and copper suppresses the thyroid taxingthe adrenals. The only thing I am tolerating is Selenium Glycine. Last year I took this for anemia (which worked well for a month, then I reordered it with a higher dose of CoQ10 and stopped tolerating it). I wasn't taking any iron back then.

that sounds very frustrating. i wonder if you have unintentionally increased your oxalate circulation despite feeling better. last year, i decreased folic acid and increased methylation (since my folic acid intake was much higher than my b12 intake). this improved my energy and sleep, but increased oxalate circulation, partly due to unintentionally decreasing magnesium and b6. i felt better initially, but got worse over time. if i were feeling better, i would reduce the methylation to get the oxalates under control and retry with added magnesium and b6 to support methylation. i wonder if some unsupported methylation is working against you now.

thank you for the informative link to what you took. i am leaning towards taking fewer things initially since it is already difficult to troubleshoot given everything i take. if i land up with added symptoms, i might add more things like you did since it decreased your symptoms.

I could never tolerate Taurine... It makes me fogged and sleepy during the day and sleepless during the night - my liver definetly rejects this supplement.

that sounds rough and very frustrating for you. i suppose i should test the taurine some time, but i am focusing on testing the custom b complex first. i checked out the b complex you mentioned. thank you for that. i am concerned about the folate as that will probably decrease my methylation, and the pantothenic acid since that was 3x normal in the 2014 organic acids test. i will keep it in mind if the simpler custom b complex doesn't work out.


i tried near 0.02mg b1 today since i had made a dilute solution and i am collecting information before i try the b complex. this caused added tinnitus and numbness in feet (presumably by increasing oxalate dumping and decreasing copper). it seems i am very short on b1. i will have to see how i do tomorrow.

Ford

 

[fprefect]

i am too low on mental clarity to reply.

i think the b1 messed with my sleep and mental clarity, and also caused increased oxalate dumping. it is unclear whether it increased or decreased magnesium.

i will try again tomorrow.

Ford

 

[CCC]

I don't want to be on the antifungals. the fungus on my feet appeared when the oxalate dumping got worse. once, the affected area doubled in size, which freaked me out. i assume this is due to low biotin from oxalate dumping. i tried adding 1mcg biotin, but got more dumping, presumably due to decreased magnesium. i tried tea tree oil, but the fungus wasn't affected. i am trying to decrease the oxalate production, which might increase the biotin and decrease the fungus. meanwhile, the antifungals don't eliminate the fungus, but they keep it from spreading. i apply it sparingly since i have noticed red spots on my feet when i applied it more liberally. i suspect the spots are related to decreased liver function. i don't know what else to do. i am open to suggestions.

Ford

On a practical note: soaking feet in very salty water is a great anti-fungal. This was an accidental discovery from a trip to the beach one year. Also very effective are: spraying with vinegar after a shower, and swabbing with Swedish Bitters. Commercial anti-fungals are useless in my experience.

I know it's only treating the symptom, but it's better than nothing.

 

[fprefect]

i am too low on energy to respond properly after wrestling with a mannequin. don't ask. it is my attempt to minimise the allodynia from new tshirts.

i will try to reply tomorrow.

Ford

 

[WakingUp]

Just came across this thread after searching 'terbinafine' on this site, which is the reason I'm here. I only took 6 days worth of terbinafine and it caused all hell to break loose - I can't emphasise how bad the experience was (even is, to an extent) and how many people wouldn't get through it. It caused severe depression, horrific nightmares, horrible anxiety, joint pain, skin issues, ridiculous insomnia and terrible fatigue. I was diagnosed as having a 'psychiatric reaction' to the drug, but it seems to have had many physiological effects on me too. Many people suffer with depression and anxiety from this drug.

It's been nearly 3 years and the fatigue and intense, disturbing dreams are still present. I can get on with life much better now though and the depression and anxiety are much, much more tolerable most of the time. Most people get over reactions to this drug as far as I can tell... not sure why I'm still suffering, but I'm here to maybe find out and address it.

 

[fprefect]

@Gondwanaland, sorry about the absurdly delayed and long reply again. i have been feeling more out of it recently.

@fprefect I must add that iron and copper supplementation can feed bad bugs. Iron can easily be measured in blood to make sure one needs to supplement with (iron, ferritin, transferrin, iron binding capacity). Copper is trickier, but RBC copper is said to be more precise. Prebiotics and glutamine have proliferative properties, and wonder if this may apply to bad bugs as well.

thank you for the info. i didn't know that. i will do some tests, probably starting with thyroid tests, including reverse t3. the previous doctor recommended it and i vaguely recall poor thyroid function can decrease mental clarity. i will add iron and copper to the list.

i can't speak for glutamine, but prebiotics can feed bad bugs. i don't know where i read that, but you can verify by googling for "fos" (or fructo oligosacharides (sp?)) or "mos" together with pathogen names. before i realised endogenous oxalate was a big issue for me, i was going to make my own yoghurt since almost every probiotic contains prebiotics and i think my CSA showed several pathogens that eat prebiotics.

Infections can be diagnosed based on increased ferritin (comparatively to baseline), lowered cholesterol (comparatively to baseline), and C-Reactive Protein above range - in addition to a White Blood Cell panel.

thank you for this. i have added these tests to my list.

i finally got the contact info of 2 local functional / integrative medicine doctors. i will look into them after i have done the tests my previous doctor recommended.

PS: In my supplementation from last year I made a big mistake - I left B3 out and this made my body to use part of the supplemental B6 to break down Tryptophan to make endogenous B3. It certainly had a detrimental impact in my mood. I also left B12 (mostly) and folate out because I had high blood levels of them, so I suspected pooling. After one month I checked them in blood again and saw that they had lowered slightly, but still were in healthy amounts.

thank you for this. i will probably supplement b3 as part of the custom b complex. when i took it on its own 2 years ago, it seemingly decreased methylation. i will look out for that. your reasoning regarding b12 and folate sounds sensible. i am not sure i can supplement either despite being low since i seem absurdly sensitive to both. perhaps i could dilute them, or dilute the b12 since the folate seems high relative to it.


by the way, my temporary addition of 0.02mg thiamine resulted in more dumping. interestingly, the bleeding and pain in my gums decreased despite the added dumping. i found a paper that said b1 is involved in biosynthesising vitamin k. perhaps you might tolerate a smaller dose of b1 (than what you took) since you didn't tolerate k2.

also, i think the oxalate circulation might have decreased a bit after the added dumping from the b1 subsided. i am unsure since minute unintended changes affect my oxalate status. i am considering trying 2mcg b1 to see if i can take that sustainably and build up. i will probably pair it with fmn and niacin since i have made those solutions.

i am almost ready to take the custom b complex i mentioned. i still need to dilute the niacin.

i'll stop here since i have run out of mental clarity.

Ford

 

[Gondwanaland]

Ford, thanks for the info on prebiotics.

starting with thyroid tests, including reverse t3

I would ask for a thyroid panel: TSH, total T3, total T4, free T3, free T4, reverse T3. I used to have high RT3 and solved it with the right amount and right type of Selenium for me.

I haven't read it anywhere, but from my own experience I know that T3 is needed for B6 to make serotonin, and B6 is needed for the thyroid to make T4. Low thyroid = low stomach acid. I like to read the info from this site.

i finally got the contact info of 2 local functional / integrative medicine doctors.

thank you for this. i will probably supplement b3 as part of the custom b complex. when i took it on its own 2 years ago, it seemingly decreased methylation.

In fact it does

your reasoning regarding b12 and folate sounds sensible. i am not sure i can supplement either despite being low since i seem absurdly sensitive to both. perhaps i could dilute them, or dilute the b12 since the folate seems high relative to it.

Nowadays I only supplement with them if blood tests show they are low.
I don't know if I am going anywhere with this attitude, but that's the way I am doing right now.

i found a paper that said b1 is involved in biosynthesising vitamin k. perhaps you might tolerate a smaller dose of b1 (than what you took) since you didn't tolerate k2.

That is very interesting info! I do not tolerate B1 outside a B complex since my cortisol is high-ish right now.

i am considering trying 2mcg b1 to see if i can take that sustainably and build up. i will probably pair it with fmn and niacin since i have made those solutions.

They will increase the need for the other Bs if taken separetely

i am almost ready to take the custom b complex i mentioned.

Good luck!

 

[Gondwanaland]

Ford, here is the info about thyroid and serotonin.

 

[Vanessa_M]

Hi there,
Do you know whether you were over / or undermethylated? Are you working with a practitioner, or did you self-diagnose methylation issues? I've heard that folate can be a tricky one - people who are undermethylated apparently have too much folate in their system, so should avoid it - but there is a lot of discussion about methylfolate, and it being a form that is more usable. Here's a discussion of folates and the problems that can occur in undermethylated persons: https://www.samanthagilbert.com/folate-friend-foe/

 

[Vanessa_M]

Here is one quote from Samantha Gilbert in the comments section of the above article: "Dr. Walsh calls methylfolate a suicide nutrient because it “loses its identity very quickly” in the methylation cycle. If your body doesn’t make enough methyl (undermethylation) and you struggle with depression/cognitive impairments, it will strip more methyl than it provides and make you feel worse." Could it be that you should not be taking folates at all, especially if you feel suicidal now that you've been taking them?

 

[fprefect]

i am too low on mental clarity to respond. the oxalate circulation is worse. i think the magnesium dose was too high yesterday.

i will try again tomorrow.

Ford

 

[fprefect]

@Gondwanaland, sorry about the very delayed reply. i will try to keep this short since i am trying to sleep earlier. these 40 hour days are making me lose weight.

A good urologist and a good endocrinologist could request the appropriate tests for you. A complete blood panel, iron panel, 24 hour urine with oxalate analisys and Anion Gap, insulin (important) and glucose assay (at least a 2 hour curve, best 4 hour if you can manage it). Your supplements might be causing you hypoglycemia - you can buy a glucose meter to test at home. Severe hypoglycemia can cause metabolic acidosis.

thank you. i have added these tests to my list.

In my personal experience B5 helps with it, but it must be in very low doses (one milligram at bed time helped me with sleep - I think it lowers histamines and therefore oxalates).

thank you for this. Susan Owens says b5 does help reduce oxalates. however, my 2014 organic acids urine test said b5 was 3 times normal. i suppose i will hold off on this unless the b complex is causing increased oxalate circulation or a newer urine test shows that b5 is too low.

I had anaphylaxis from biotin alone

wow. that sounds very rough for you. i will hold off on speculating why since you managed to take it with other things.

Since my blood levels of B12 and folate were excellent, I left them out - I also reasoned they were pooling in blood due to lack of activation factors. In my experience it was OK to left them out of the supplementation in the short term since the low-dose vitamins I was taking were making it easier to get more folate and B12 from food. After a couple of weeks I felt the need for B12 (neuropathy/numbness) and then took one drop 1-2x weekly.

that sounds very sensible. i am glad you didn't make things worse. i am trying to be as tuned in to my needs.

I am so sorry and hope you find appropriate health care soon to relieve your discomfort.

thank you. i am working on it, but i have mundane things to do first, like getting clothes that won't make me worse daily due to allodynia.

i will probably try 4mcg astaxanthin to see if it decreases the oxalates a bit while i figure out what kind of b complex works. i am concerned about my gums, which have been painful for weeks or more. the pain coincides with my oxalate status (ie. tinnitus) and i haven't got a sustainable b1 dose yet.

Ford

 

[Gondwanaland]

my oxalate status (ie. tinnitus)

Me too, I have always connected tinnitus with oxalate recirculation, but just recently I realized it can also be due to thyroid function (both high and low), or insulin release after eating.

 

[fprefect]

i am too low on energy to respond.

i will try again tomorrow.

Ford

 

[fprefect]

i tried moving my meal time to decrease my rate of weight loss and accidentally caused more oxalate circulation. i am too low on mental clarity to reply.

i will try again tomorrow.

Ford

 

[fprefect]

i am too low on mental clarity to respond. the oxalate circulation is still higher than previously.

i will try again tomorrow.

Ford

 

[fprefect]

the oxalate circulation is a bit better due to reverting an accidental change, but the mental clarity is still not good enough for me to reply today. touch wood, but at least i am a bit less hungry during the day.

i will try again tomorrow.

Ford