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

fprefect

Ford Prefect
Messages
117
Is copper and magnesium all you're taking, @fprefect ?

@JaimeS, sorry about the delay. some symptoms increased quite a bit in the past few days and i didn't have the energy to respond properly. the updated list is below. i would appreciate your thoughts. my efforts have not yielded great results. on checking, it seems i only tested decreasing 9 of the approximately 30 items. those are listed below also. please let me know if you want more detail.

complete list:
(ON = once nightly)
  • Cap Lyrica 75mg ON
  • Tab Amitryptiline 5mg ON
  • Calcium Supplement 600mg ON
  • Magnesium 570mg
  • magnesium oxide.
  • magnesium glycinate.
  • magnesium lysinate.
  • magnesium glycinate.
  • magnesium chloride.
  • Paracetamol 650mg ON
  • Nasonex nasal spray. 2 sprays. ON
  • Passion flower 200mg
  • Lemon balm 150mg
  • Valerian 785mg
  • Chamomile flower 100mg
  • Suntheanine 200mg
  • Melatonin 1.75mg
  • acetyl l carnitine. 1000mg
  • alpha lipoic acid. 600mg
  • co enzyme q10. 300mg
  • ribose. 8x750mg daily with meals.
  • st johns wort. 300mg
  • berocca b vitamin drink.
    • each tab contains
      • b1. 15mg.
      • b2. 15mg.
      • b5. 25mg.
      • b6. 10mg.
      • biotin. 150mcg.
      • b12. 10mcg.
      • c. 500mg.
      • b3. 50mg.
      • folic acid. 400mcg.
      • calcium. 100mg.
      • magnesium. 100mg.
      • zinc. 10mg.
    • i take 13/16 of 1 tablet and take other supplements equivalent to 3/16 berocca, but only 7 out of 12 ingredients. the idea was to decrease folic acid.
  • vit methyl b12. 52Mcg.
  • potassium gluconate. 19x135mg spread through the day.
  • vit d. 1000iu 3x.
  • 1/16 centrum advance.
  • copper (chloride) 5mcg
  • homeopathy magnesium
  • homeopathy calcium
  • homeopathy alfalfa
  • vit c. 1.5g.
  • antifungal switched every 2 weeks.
  • miconazole
  • terbinafine
  • omega 3 epa. 720mg.
  • omega 3 dha. 480mg.
  • echinacea. 500mg.
  • evoraplus oral probiotic. 1/128 tablet daily. 2 weeks on, 2 weeks off.

list of items i tried decreasing, but reverted due to added symptoms:
  • amitriptyline
  • magnesium
  • paracetamol
  • alpha lipoic acid
  • b12
  • potassium
  • centrum advance
  • copper
  • evoraplus
  • berocca

i would really like to stop the paracetamol, centrum advance, copper, berocca, alpha lipoic acid and antifungals.

Ford
 

fprefect

Ford Prefect
Messages
117
Just at a glance, you may want to ditch the copper supplement altogether and eat some foods rich in copper, such as dark chocolate (if that's something you tolerate) or dark, leafy greens... It seems like the symptoms of low copper are disappearing but the symptoms of high copper are appearing in their place the moment you try to supplement.

You might find this interesting: http://lpi.oregonstate.edu/mic/minerals/copper#deficiency

@JaimeS, sorry about the delay again. i hadn't thought of high copper symptoms. thank you. i am trying to decrease my copper supplementation, but it seems i need to balance my magnesium intake while doing that. i made a note to test some high copper foods once i can stop my supplemental copper intake. dark chocolate and leafy greens are apparently high in oxalate though. i will see how i respond to crab or something else high in copper. it feels so odd increasing my food choices, even if just for 1 meal. :)

that is an interesting link. i didn't know that anemia from copper deficiency might not respond to iron. i am waiting on some iron bisglycinate to arrive so i can try alleviating the suspected anemia if needed. increasing copper does decrease the anemia, but that doesn't seem workable. i feel a bit more panicky reading about these symptoms, but we gotta do what we gotta do. :)

Ford
 

fprefect

Ford Prefect
Messages
117
Do you think your depression, anxiety as well as mental clarity are better or worse than when you first wrote a year ago? I know thiis may be hard to answer especially if your mood varies and being foggy doesn't help. Been there done that!

Take care.

@barbc56, thank you for your response. sorry about the absurdly delayed reply. I have been too low on energy to reply faster.

as you said, this is difficult to answer. the symptoms change through the day and also depend on supplement dosage.

the mental clarity is odd. it got worse, then a bit better, and then worse again. I honestly don't know how it compares to the previous year. I seem to be taking quite a bit longer to get things done. i think it is worse. sometimes, it is much worse.

the anxiety/panic got better, although that seemed to happen together with oxalate dumping. now the oxalate dumping makes the panic worse. I don't feel like I am dying like I did last year. however, the panic is sporadically worse. I don't know how I will feel days from now. i feel increasingly trapped. i seem to be losing hope, which is something i have refused to feel since all this started near 2007.

i dont know what to make of the depression. i recall having vivid thoughts about my possible death last year, but it was erratic. now, i find more consistently depressed thought patterns, but not as extreme. i find myself empathising more with those cfs patients who ended their lives. those poor souls. i do not have any plans to follow that path and plan to keep fighting this. regardless, after the good advice i received from people here last year, i ensured the local suicide hotline number is on my phone, just in case. i also informed my sister, who is a psychiatrist. she is worried, but seems to think i am not suicidal and that i should try to lift my mood.

why do you ask?

I am sorry you had to go through feeling all that. it must have been difficult for you. take care.

Ford

ps. sorry about the rambling. i don't seem to be thinking clearly.
 

Gondwanaland

Senior Member
Messages
5,094
the oxalate dumping makes the panic worse.
I know what you mean.

Do you have pH strips to test your urine at home? When my urine pH was 4.5 in the evening I found sodium bicarbonate baths extremely relieving.

If one doesn't have or can't afford the strips, a mouth swish with 1/2 glass of water and 1/4 tsp of sodium bicarb could gauge the need for it. A nephrologist told me it would have been safe to swallow a little bit of it if it feels good in the mouth. If it feels good and the tongue relaxes then a bicarb foot bath with 1/2 or 1 Tbsp of bicarb in warm water can be helpful.

If it helps, sodium bicarbonate can be used as a shower scrub (I have been using it for 2 years). Bicarb immersion baths (between 3/4 - 1 cup in the bathtub) helped me immensely with the oxalate acidity 2 yrs ago. But it is important to be sure one needs it in the 1st place by testing urine pH or doing mouth swishes. Alkalosis can also be extremely dangerous.

If you have access to lab testing, you could have a proper blood and urine analysis for acidosis.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@JaimeS, sorry about the delay. some symptoms increased quite a bit in the past few days and i didn't have the energy to respond properly. the updated list is below. i would appreciate your thoughts. my efforts have not yielded great results. on checking, it seems i only tested decreasing 9 of the approximately 30 items. those are listed below also. please let me know if you want more detail.

complete list:
(ON = once nightly)
  • Cap Lyrica 75mg ON
  • Tab Amitryptiline 5mg ON
  • Calcium Supplement 600mg ON
  • Magnesium 570mg
  • magnesium oxide.
  • magnesium glycinate.
  • magnesium lysinate.
  • magnesium glycinate.
  • magnesium chloride.
  • Paracetamol 650mg ON
  • Nasonex nasal spray. 2 sprays. ON
  • Passion flower 200mg
  • Lemon balm 150mg
  • Valerian 785mg
  • Chamomile flower 100mg
  • Suntheanine 200mg
  • Melatonin 1.75mg
  • acetyl l carnitine. 1000mg
  • alpha lipoic acid. 600mg
  • co enzyme q10. 300mg
  • ribose. 8x750mg daily with meals.
  • st johns wort. 300mg
  • berocca b vitamin drink.
    • each tab contains
      • b1. 15mg.
      • b2. 15mg.
      • b5. 25mg.
      • b6. 10mg.
      • biotin. 150mcg.
      • b12. 10mcg.
      • c. 500mg.
      • b3. 50mg.
      • folic acid. 400mcg.
      • calcium. 100mg.
      • magnesium. 100mg.
      • zinc. 10mg.
    • i take 13/16 of 1 tablet and take other supplements equivalent to 3/16 berocca, but only 7 out of 12 ingredients. the idea was to decrease folic acid.
  • vit methyl b12. 52Mcg.
  • potassium gluconate. 19x135mg spread through the day.
  • vit d. 1000iu 3x.
  • 1/16 centrum advance.
  • copper (chloride) 5mcg
  • homeopathy magnesium
  • homeopathy calcium
  • homeopathy alfalfa
  • vit c. 1.5g.
  • antifungal switched every 2 weeks.
  • miconazole
  • terbinafine
  • omega 3 epa. 720mg.
  • omega 3 dha. 480mg.
  • echinacea. 500mg.
  • evoraplus oral probiotic. 1/128 tablet daily. 2 weeks on, 2 weeks off.

list of items i tried decreasing, but reverted due to added symptoms:
  • amitriptyline
  • magnesium
  • paracetamol
  • alpha lipoic acid
  • b12
  • potassium
  • centrum advance
  • copper
  • evoraplus
  • berocca

i would really like to stop the paracetamol, centrum advance, copper, berocca, alpha lipoic acid and antifungals.

Ford


Quite a list! I presume some of these are in the same pill, yes?

-J
 

Gondwanaland

Senior Member
Messages
5,094
Rereading the list, a few things came to my mind:

-chronic use of paracetamol causes liver damage (my husband got Drug-Induced Hepatitis from it), so do anti-fungals

-Valerian can be toxic to the liver as well with prolonged use

-St. John's Wort slows a liver pathway (glucuronidation if I am not mistaken) and it is highly recommended to stop its use when taking most medications, esp. abx.

-copper supplementation is recommended if a deficiency is diagnosed via analysis of blood panel (very few doctors know how to interpret a blood panel) and RBC copper deficiency. In case a deficiency is proven, only a few days (usually less than a week) of up to 2mg is generally enough to replenish it.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I'm not sure about the use of serotinergic agents in ME in the first place. Lots of us have anti-serotonin antibodies (2/3 in one small study) and may have elevated serotonin in the brain. Elevated serotonin can cause jumpy HR, anxiety, sweats, etc. I'd ease off the St. John's Wort too, IOW, because its mechanism of action is the same as an SSRI's.

But you know, 300-mg ain't much -- unless it's "supplemented" with active constituents, which it might well be. Look for the bottle to say it 'standardized' the amount of active ingredients (hypericin maybe), which means the manufacturer added additional chemicals to make the herb more effective in smaller dosages.

THIS IS JUST ME, and I really, really am leery of giving you ANY advice when you are on so much stuff, but I might seriously consider starting from scratch with the stuff I was totally, 110% sure I couldn't live without, and slowly add things back, easing forward and back on dosage to be sure that they are helping you. There's just so much here that it feels impossible to tease out what you do and don't need. Some of it you might even be overdoing or might be making you feel more 'off'.

If you have already done that, feel free to ignore -- every time I try a new pill, I do it this way so that I am as sure as I can be that it is actually what is helping me, and I'm not just buying a new supplement for nothing.

I am NOT a doctor, this is NOT medical advice, etc.

-J
 

fprefect

Ford Prefect
Messages
117
@JaimeS and @Gondwanaland, thank you for your replies. i am too low on mental clarity and energy to respond today. i think i let the magnesium get too low.

along with what you have suggested, i am considering adding 20iu of vitamin A to try and decrease the oxidative stress.

i will try replying again tomorrow.

Ford
 

fprefect

Ford Prefect
Messages
117
I can't give my opinion on commercial B complexes since the one I take is locally compounded by prescription of my nutrologist. But I have played a little with single Bvits to know how I react to each one of them.
But I noticed this one you are taking contains vit C which chelates copper and increases my tinnitus too much as well.

I squeeze half a small lemon in a glass of water and drink it just before breakfast. I have been doing it for a year. I think it is one of the things that helped.

I was able to take calcium (~50mg) 3x. The first two times it cleared my brainfog and caused some sort of dumping (very smelly urine). The 3rd time it probably caused increased coagulation (heavy calves) so I never took it again.

Yes, oxalates bind to iron and worsen anemia. I took iron bisglycinate (~4mg) for a few days and the anemia symptoms disappeared. If you have low iron I think B vits will make it worse, esp. B1 and B2. If you have low copper, B6 can make anemia worse.

Perhaps you are deficient in glutamine? I have been taking it very low dose (50 - 100 mg) to stimulate RBC and WBC proliferation and it helps with any pain that my be related with leaky gut and low glutathione. We must be very careful with glutamine though as it can convert to glutamate and cause low B6. My diet has been high in glycine lately (chicken broth - watch out for histamines), so I think this helps to tolerate glutamine better and potentiates glutathione conjugation.

B2 places greater demand on iron (glutamine as well probably).

It would be interesting to check for pathogens (if you haven't already), because I think microbes use oxalates as a shield (biofilm) or produce oxalates as a byproduct inside our bodies.

For me the worst oxalate issues happened at the same time with anemia.

@Gondwanaland, sorry about the delay and sorry this is long. i decreased the copper to decrease the b vitamin demand (till i can supplement b vitamins). it has been messing with my mental clarity. thank you for sharing. unfortunately, we share the oxalate issue and the sensitivity, although i am happy you seem better than a year ago.

the anemia might be back. i might try some iron bisglycinate.

i understand responses to b complexes are probably very individual. how did you find someone who could figure out which b vitamins help you? i tried googling "nutrologist", but it seems like an uncommon term. i recall finding 1 machine translated article. the doctors i have seen haven't known how to do this.

i don't know what b complex i can take other than what i linked earlier since i take 400mcg folic acid as part of a b vitamin drink as compared to only 52mcg methyl b12. ie. the inverse ratio that is recommended. when i decreased folic acid last year, it increased my methylation. i am trying to avoid adding folic acid as i expect it to decrease my methylation. that b complex i mentioned is the only one i found without folic acid / methylfolate. i suppose i could try to get the same thing compounded, but without the vitamin c.

i am also considering reducing my vitamin c since i take 2g and Susan Owens thinks that gets converted to oxalate. i am concerned i might be low in vitamin c, but i cant tell since the test depends on ascorbic acid and Susan says that gets deranged due to oxalate.

it is unclear from symptoms whether i have low vitamin c. i have dry hair, but it isn't splitting. i have bleeding gums, which started after a dental appointment. some skin is dry and a bit scaly. 1 wound healed a bit slowly. i don't seem to be fighting off infections well. all those are possible low vitamin c symptoms. however, i don't have easy bruising or nosebleeds. i am confused. i could test decreasing the vitamin c and see how i do.

i am glad the lemon juice might have helped you. i tried 0.1ml lemon juice and landed up with diarrhea about 10 minutes after. i will try again when i don't start the day with diarrhea, which is recently an oxalate dumping symptom.

your calcium experience sounds confusing and frustrating for you to deal with. i still take 600mg calcium before sleep. i can't tell from the lowoxalate.info site whether calcium away from food increases oxalate dumping or not. i am thinking of reducing my calcium intake to see if the oxalate symptoms decrease. however, like the vitamin c, i am concerned this might decrease my energy too much.

sigh. that iron and b vitamin and copper info is good to know, but so frustrating. did your b complex not cause anemia after you took iron for a few days? did you take your multi mineral first or b complex first or both together?

my 2014 urine amino acid test does say i am low in glutamine. i will look into glutamine. thank you. doesn't glycine get converted to oxalate also? i hope that isn't causing you problems. i wonder if a chicken or bone broth might be a multi mineral of sorts. i seem on the edge of having a histamine issue. touch wood.

maybe after trying a multimineral alone and a b complex alone, i should try taking them together to minimise (or maybe maximise :p) issues.

as for pathogens, other than checking for EBV, i have only done the comprehensive stool analysis, which showed a mild (as of 2014) candida infection, amongst other under and overgrowth. you might be right regarding microbes and oxalates.

i can empathise with having to deal with oxalates and anemia at the same time. the anemia seems to show up once the oxalate issues get bad enough.

Ford
 

Gondwanaland

Senior Member
Messages
5,094
i understand responses to b complexes are probably very individual. how did you find someone who could figure out which b vitamins help you? i tried googling "nutrologist", but it seems like an uncommon term. i recall finding 1 machine translated article. the doctors i have seen haven't known how to do this.
She is a medical doctor who specialized in vitamins and its interactions. It can be called integrative or functional medicine. She dosen't always get my prescriptions right, though :rolleyes:
i am glad the lemon juice might have helped you. i tried 0.1ml lemon juice and landed up with diarrhea about 10 minutes after. i will try again when i don't start the day with diarrhea, which is recently an oxalate dumping symptom.
You have a severe gut dysbiosis. My husband is currently taking antibiotics and as a side effect his IBS-D is just gone. o_O When he finishes the round in a couple of weeks I am curious to see if his FODMAPs intolerances are still there. Apparently supplementing vitamins and minerals (especially iron and copper) end up feeding the wrong microbes in our guts :cautious:
sigh. that iron and b vitamin and copper info is good to know, but so frustrating. did your b complex not cause anemia after you took iron for a few days? did you take your multi mineral first or b complex first or both together?
Taking isolated B vits in high or low doses caused me problems. A B complex seems safe. I prefer to take the vitamins together with the minerals, but I only take iron every other day for a week in a month. Right now I am taking nothing since I am also on abx.
my 2014 urine amino acid test does say i am low in glutamine. i will look into glutamine. thank you. doesn't glycine get converted to oxalate also? i hope that isn't causing you problems. i wonder if a chicken or bone broth might be a multi mineral of sorts. i seem on the edge of having a histamine issue. touch wood.
Glutamine is a key nutrient. I am not sure if its proliferative properties would cause worsening of dysbiosis though. In low doses (below 0.5 g) it has always helped me to get out of anemia and to fix leaky gut. Yes glycine can potentially convert into oxalates, but if I take it bound to the minerals I need (iron, selenium), it apparently doesn't. I don't tolerate bone both well either, not sure if the main issue is histamine or oxalate (probably both).
i can empathise with having to deal with oxalates and anemia at the same time. the anemia seems to show up once the oxalate issues get bad enough.
This is a chicken or egg question :confused:
Perhaps getting a glucose/insulin panel could hint you into something? The main probles underlying oxalate issues are hypo and hyperglycemia, hyperinsulinemia /insulin resistance, anemia and poor thyroid function. In addition to pathogens, of course.
 

fprefect

Ford Prefect
Messages
117
I didn't like it since some minerals are bound to hydroxyapatite (this composes stones in a not very common type of urolithiasis), Magnesium aspartate (I couldn't tolerate this form and found out that aspartate is a precursor in the glyoxal cycle which can result in endogenous oxalates under oxidative stress), selenomethionine gives me brainfog, manganese sulfate gives me depression, potassium chloride worsened my acidosis etc etc. The only form of magnesium I ever tolerated was magnesium oxide, but right now any magnesium gives me low iron symptoms. Iron and selenium I personally prefer to be bound to glycine, zinc causes me instant anemia.

Of course we can't know if your reactions will be similar to mine.
@Gondwanaland, i'm sorry i keep asking you questions. i am trying to stand on my own feet again.

huh. that type of stone forming is very good to know about. thank you.

from the sounds of it, i probably won't tolerate magnesium aspartate either. my teeth get sensitive when the oxalate dumping increases too much. Susan Owens says that is due to excessive oxidative stress. my glyceric acid was 3x the upper limit in 2014. it sounds like Susan said that suggests endogenous production.

it seems you have tried *a lot* of things. that sounds very frustrating for you. that is very curious about magnesium causing low iron symptoms in you since it sounds like your oxalate circulation has decreased. i had more of the suspected anemia today. i figured the accidentally increased magnesium had decreased iron and/or copper via increased oxalate circulation.

0.3mg zinc citrate caused me what i think is anemia.

what multi mineral do you take? even if i can't get the same product, perhaps i can get it compounded. i will probably respond differently, but it seems sensible to test what works for you since we have/had some similar issues. i am trying not to test individual ingredients, but i might have to.

i cross referenced my list of supplements and test results against what is known to increase oxalate circulation. i am testing decreasing vitamin c today as a result. also, it seems like low magnesium, b1 and b6 might be causing oxalate production due to being too low. so, a b complex and a multi mineral does seem like a good idea. also, low taurine might be causing more oxalate absorption. i am considering testing that also. there are other possibilities, but they seem less likely to be causing issues.

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

Ford
 

Gondwanaland

Senior Member
Messages
5,094
i figured the accidentally increased magnesium had decreased iron and/or copper via increased oxalate circulation.
Hey, that is an interesting explanation!
0.3mg zinc citrate caused me what i think is anemia.
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.
what multi mineral do you take? even if i can't get the same product, perhaps i can get it compounded. i will probably respond differently, but it seems sensible to test what works for you since we have/had some similar issues. i am trying not to test individual ingredients, but i might have to.
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.
low taurine might be causing more oxalate absorption
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.
 

Gondwanaland

Senior Member
Messages
5,094
@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.

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.

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.
 
Last edited:

fprefect

Ford Prefect
Messages
117
@Gondwanaland, thank you for your responses.

I tested decreasing vitamin c by 3mg yesterday to try and decrease oxalate production. i reverted to the usual 1800mg today since the decrease caused other issues. it looks like i might need a b complex, a multi mineral and more antioxidants before i retry this.

i am too low on mental clarity to post the changes in symptoms. besides, i have an increased headache and increased depression.

i will try to post again tomorrow.

Ford
 

fprefect

Ford Prefect
Messages
117
I know what you mean.

Do you have pH strips to test your urine at home? When my urine pH was 4.5 in the evening I found sodium bicarbonate baths extremely relieving.

If one doesn't have or can't afford the strips, a mouth swish with 1/2 glass of water and 1/4 tsp of sodium bicarb could gauge the need for it. A nephrologist told me it would have been safe to swallow a little bit of it if it feels good in the mouth. If it feels good and the tongue relaxes then a bicarb foot bath with 1/2 or 1 Tbsp of bicarb in warm water can be helpful.

If it helps, sodium bicarbonate can be used as a shower scrub (I have been using it for 2 years). Bicarb immersion baths (between 3/4 - 1 cup in the bathtub) helped me immensely with the oxalate acidity 2 yrs ago. But it is important to be sure one needs it in the 1st place by testing urine pH or doing mouth swishes. Alkalosis can also be extremely dangerous.

If you have access to lab testing, you could have a proper blood and urine analysis for acidosis.
@Gondwanaland, thank you for this. i just realised acidosis seems more urgent and important than endogenous oxalate production. sorry this is long. i am not thinking clearly.

i don't have ph strips. i made a note to buy some. i hadn't considered that the panic might be due to something other than oxalates. it looks like JaimeS was right about my tunnel vision.

in case it is urgent, i will test swishing with sodium bicarb. i was concerned that the sodium might make my mental clarity worse, but this seems more urgent and important.

i will keep the bicarb scrub in mind also.

i suppose i will get a blood and urine analysis if the mouth swish and urine ph test suggest i need bicarb. should i be taking this more seriously? everything seems urgent and important, and i am not thinking clearly.

as for trying decreasing the vitamin c a few days ago, amongst other things, that decreased the mental clarity and increased the numbness in my feet and hands, and decreased the allodynia, and increased the teeth sensitivity. as far as i can tell, it decreased magnesium and copper, increased methylation and decreased antioxidant status. the acucell dr says vitamin c decreases copper. so i suspect that the vitamin c decrease actually caused oxalate dumping. also, the teeth sensitivity has stayed higher despite reverting to the higher vitamin c. i think the vitamin c decrease also decreased my antioxidant status. i think it might not be a good idea to remove any antioxidants till the teeth sensitivity goes away.

i am trying to find a functional or integrative medicine doctor to help prescribe vitamins and/or minerals based on my state / test results. this is difficult as the local (Singapore) ministry of health apparently makes life difficult for such doctors and they don't advertise. anyway, i might have a lead.

thank you for the link to the b complex and multi mineral you took. given the lack of a dr knowledgeable about vitamins and minerals, i am considering testing a custom b complex first, possibly with some magnesium, and maybe some copper. here is the b complex:
  • b1. thiamin mononitrate. 15mg.
  • b2. riboflavin. 10.2mg.
  • b3. niacinamide. 50mg.
  • b6. pyridoxine hydrochloride. 5mg.
i will test 1/1000th of that since i am absurdly sensitive. i left out b5 since my b5 was too high and the calcium in the calcium pantothenate might increase oxalate circulation. i left out biotin since it increased dumping when i tried 1mcg, possibly due to increasing magnesium demand. i left out folate since that is already too high relative to my b12 and is keeping my methylation status low. i left out b12 since i am not ready to increase methylation and it also increases histamines right now. i am open to suggestions.

i seem worse. the depression, panic, oxalate circulation and allodynia have increased, presumably due to the decreased antioxidant status. i hope the b complex alleviates that.

Ford
 

Gondwanaland

Senior Member
Messages
5,094
i just realised acidosis seems more urgent and important than endogenous oxalate production.
They are two faces of the same coin.
i suppose i will get a blood and urine analysis
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.

Of course you might have something completely different - a pathogen, for instance - and everything that you are reading here might harm you further, so please seek a good doctor.

My tip for finding (good and bad) doctors is to call local compounding pharmacies and ask for names of doctors whos prescribe vitamins. My local pharmacist was very happy to provide me with a list of names of integrative doctors and functional nutritionists. Also stores selling organic food products and suppelments, acupuncture clinics etc.
i left out b5 since my b5 was too high and the calcium in the calcium pantothenate might increase oxalate circulation.
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).
i left out biotin since it increased dumping when i tried 1mcg, possibly due to increasing magnesium demand
I had anaphylaxis from biotin alone
i left out folate since that is already too high relative to my b12 and is keeping my methylation status low. i left out b12 since i am not ready to increase methylation and it also increases histamines right now.
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.
i seem worse. the depression, panic, oxalate circulation and allodynia have increased, presumably due to the decreased antioxidant status. i hope the b complex alleviates that.
I am so sorry and hope you find appropriate health care soon to relieve your discomfort.
 

fprefect

Ford Prefect
Messages
117
I know what you mean.

Do you have pH strips to test your urine at home? When my urine pH was 4.5 in the evening I found sodium bicarbonate baths extremely relieving.

If one doesn't have or can't afford the strips, a mouth swish with 1/2 glass of water and 1/4 tsp of sodium bicarb could gauge the need for it. A nephrologist told me it would have been safe to swallow a little bit of it if it feels good in the mouth. If it feels good and the tongue relaxes then a bicarb foot bath with 1/2 or 1 Tbsp of bicarb in warm water can be helpful.

If it helps, sodium bicarbonate can be used as a shower scrub (I have been using it for 2 years). Bicarb immersion baths (between 3/4 - 1 cup in the bathtub) helped me immensely with the oxalate acidity 2 yrs ago. But it is important to be sure one needs it in the 1st place by testing urine pH or doing mouth swishes. Alkalosis can also be extremely dangerous.

If you have access to lab testing, you could have a proper blood and urine analysis for acidosis.
@Gondwanaland, i should have made it clear that i am trying to see a doctor and Susan Owens. i haven't managed to get a response from Susan recently. meanwhile, the dentist i saw knows local functional / integrative medical doctors. i am trying to get their names, but haven't managed to get through to her or her receptionist. if that takes too long, i will try contacting the compounding pharmacy to see if they know doctors who prescribe vitamins, as you suggested.

meanwhile, i am considering whether to see the same doctor i saw previously. he understands some gut stuff, some methylation stuff, and mercury toxicity, but only has a passing understanding of oxalates. it was his suggestion that i do the low oxalate diet and talk to Susan. however, he kept repeating some of the same advice even after i told him i couldn't tolerate some of his recommendations. also, i haven't managed to move on some of the testing he recommended, like getting my thyroid and adrenals looked at. i am wondering whether to prioritise the oxalates or what he suggested, which was before i got worse. perhaps i could see this doctor till i find someone who understands my current situation better.

also, thanks for the bicarb suggestion. i am glad it helped you with the panic. i tried the mouth swish test for the sodium bicarb. i couldn't really tell whether my tongue relaxed and whether it felt good. it tasted weird. sometimes, the taste of some supplements turns sweet for some reason. that didn't happen with the bicarb. so, i left it at that since i didn't want to toy with alkalosis. i did note that the tinnitus decreased a bit later. i wonder if the sodium decreased the magnesium, which had increased oxalate circulation earlier today. i ordered the ph strips and will test urine using those.

incidentally, i haven't managed to try more than a few suggestions from you and JaimeS, despite my efforts. my feeling worse mostly reflects the ongoing endogenous oxalate production which i haven't managed to decrease yet. it is also due to varying magnesium intake (magnesium oil), which i am trying to standardise.

Ford
 

fprefect

Ford Prefect
Messages
117
Quite a list! I presume some of these are in the same pill, yes?

-J

@JaimeS, sorry about the delay again. i am trying to get to these messages in chronological order. i appreciate your input. to be clear, i don't hold anyone else responsible for my health, unless they inject me with something while i am unconscious. i haven't held doctors responsible even when their advice has made me worse. it would be absolutely wrong for me to consider you or Gondwanaland or anyone else responsible for my health when i am still the one making the decision to do something. it is solely my responsibility.

anyway, it *is* quite the list. i feel sheepish about that. i should have tested reverting more of those things ages ago. i have amended the list to reflect which items are from a single pill. i hope it is clear.

Ford

ps. oops. i can't edit the list anymore. it is in the following post.
 

fprefect

Ford Prefect
Messages
117
here is the complete list of medicines and supplements:
(ON = once nightly)
  • Cap Lyrica 75mg ON
  • Tab Amitryptiline 5mg ON
  • Calcium Supplement 600mg ON
  • Magnesium 570mg
    • magnesium oxide (gnc magnesium, 250mg).
    • dr's best magnesium
      • magnesium glycinate. about 100mg.
      • magnesium lysinate. about 100mg.
    • magnesium glycinate (pure encapsulations, 120mg).
    • magnesium chloride (magnesium oil, about 10mg).
  • Paracetamol 650mg ON
  • Nasonex nasal spray. 2 sprays. ON
  • gnc natra sleep
    • Passion flower 200mg
    • Lemon balm 150mg
    • Valerian 150mg
    • Chamomile flower 100mg
    • Suntheanine 200mg
  • Valerian 635mg
  • Melatonin 1.75mg
  • acetyl l carnitine. 1000mg
  • alpha lipoic acid. 600mg
  • co enzyme q10. 300mg
  • ribose. 8x750mg daily with meals.
  • st johns wort. 300mg
  • berocca b vitamin drink.
    • each tab contains
      • b1. 15mg.
      • b2. 15mg.
      • b5. 25mg.
      • b6. 10mg.
      • biotin. 150mcg.
      • b12. 10mcg.
      • c. 500mg.
      • b3. 50mg.
      • folic acid. 400mcg.
      • calcium. 100mg.
      • magnesium. 100mg.
      • zinc. 10mg.
    • i take 13/16 of 1 tablet and take other supplements equivalent to 3/16 berocca, but only 7 out of 12 ingredients. the idea was to decrease folic acid.
  • vit methyl b12. 52Mcg.
  • potassium gluconate. 19x135mg spread through the day.
  • vit d. 1000iu 3x.
  • 1/16 centrum advance.
  • copper (chloride) 5mcg
  • homeopathy magnesium
  • homeopathy calcium
  • homeopathy alfalfa
  • vit c. 1.5g.
  • antifungal switched every 2 weeks.
    • miconazole
    • terbinafine
  • now super epa
    • omega 3 epa. 720mg.
    • omega 3 dha. 480mg.
  • echinacea. 500mg.
list of items i tried decreasing, but reverted due to added symptoms:
  • amitriptyline
  • magnesium
  • paracetamol
  • alpha lipoic acid
  • b12
  • potassium
  • centrum advance
  • copper
  • berocca
i would really like to stop the paracetamol, centrum advance, copper, berocca, alpha lipoic acid and antifungals.

Ford