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

[JaimeS]

I found I could decrease antimicrobials (anti-fungals) when I noticed a tiny improvement that got me 'breathing room' and I backed off of them while aggressively using probiotics.

I think I was killing off too many important members of my microbiome, paving the way for some more resistant strains. Once I backed off on the antimicrobials, paradoxically, my symptoms improved.

FWIW, that is a pretty recent change that seems to be going well so far. I'm using a probiotic cream, two internal probiotics, and two formulas meant to boost my own immune system: Lactoferrin, and an herbal supplement with immune-boosting rather than antimicrobial properties.

I was doing Oregano oil (often!), colloidal silver on its own (the herbal formula has some), Candidase, etc. Doing none of these, now.

-J

 

[Gondwanaland]

i haven't managed to get a response from Susan recently.

Last thing I heard she is with Multiple Sclerosis.

i haven't managed to move on some of the testing he recommended, like getting my thyroid and adrenals looked at.

3 things must be fixed before one can cope with oxalates again:
1) anemia (between B vitamins, minerals and glutamine, low dose glutamine helped me the most)
2) hypo/hyper insulinemia and glycemia via nutrition and herbs (food seasonings helped me the most)
3) proper thyroid support

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.

Good, well done, that is what I meant: ask your body, you would probably crave for something that would do you some good. On occasion I also had relief from ingesting high oxalate foods, which stop the ox dumping when eaten once or twice. It took me a while to understand this mechanism and it was not so clear to me when I should stop eating something that made me feel better at first and then started hurting me next.

My main symptoms from oxalate overload was increased urination, insatiable thirst and consequent dehydration. The only water that would satiate my thirst was high silica water (Volvic, Fiji), and unfortunately these aren't available here where I live, but I had access to Volvic last time I was in Europe and dealing with polyuria and dehydration at that time. That water was wonderful.

 

[JaimeS]

sometimes, the taste of some supplements turns sweet for some reason.

I've noticed this too! When they taste sweet when they normally don't, I view this as you REALLY need that supplement at that moment. Black cohosh is the one that comes to mind; I've often described the taste as 'soapy dirt'. But if certain hormones are low, it tastes sweet, instead. The difference is really dramatic.

Can't science this one -- no idea why it should be the case.

 

[fprefect]

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.

@Gondwanaland, thank you for looking over the list. i am sorry this is long winded. i am not thinking clearly.

i hope your husband's hepatitis got better. you guys have been through the wringer. i want to stop the paracetamol. i take it to help with allodynia so i can sleep. when i tried reducing it, the allodynia woke me up. i can't tolerate added zinc and copper and mb12, each of which improve the allodynia (presumably via methylation).

the doctor suggested decreasing it 1/4 pill at a time, which i haven't tried. right now, i am concerned that decreasing it might increase my methylation (via not using glutathione) the way 1mcg copper seems to, and result in greater b vitamin demand and thus more oxalate production. is there some way to decrease this that i am not seeing due to low mental clarity?

meanwhile, i am trying to deal with some pain and bleeding in my gums. the pain seems to increase when the oxalate circulation is higher. i suspect a vitamin k deficiency, but i recall someone on PR saying it caused them to dump oxalates when they supplemented. it seems best to hold off on that till i get the endogenous oxalate production under control. i tried gargling with salt, but that increased fasciculations and tinnitus. i assume it decreased magnesium and increased oxalates. i am considering a hydrogen peroxide rinse, but i found your post saying that hydrogen peroxide uses up glutathione when the oxalate load is likely to be high. do you know any other way to deal with this?

i am getting too low on mental clarity. i will try replying again tomorrow.

Ford

 

[Gondwanaland]

i suspect a vitamin k deficiency, but i recall someone on PR saying it caused them to dump oxalates when they supplemented.

That was me! I need vitamin K2 so badly, but can't tolerate it

Sorry, I don't know the answer to your questions :thumbdown:

 

[fprefect]

i am having too much of a headache to post. the suspected anemia is worse. i am not sure if magnesium is lower again, possibly due to gargling salt yesterday.

i will try again tomorrow.

 

[fprefect]

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

@Gondwanaland, sorry this is delayed and long winded. i am not thinking clearly.

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.

i didn't know valerian could be toxic to the liver. thank you. i have been using it for years. i could try decreasing it and increasing the gnc natra sleep (passion flower, lemon balm, lower dose valerian, chamomile flower, l-theanine) since i take half of the maximum suggested dose of that.

i am running out of mental clarity. i will try responding again tomorrow.

i am waiting for the compounded b complex to arrive. the endogenous oxalate production seems to be increasing. i tried adding 0.01mg fmn for today to see my response and to speed up adjusting the b complex in future. i think it increased the allodynia.

Ford

 

[Gondwanaland]

Ford, get a liver panel (blood test) whenever possible. Check out for urea as well.

I had a teeny tiny toe nail fungus that disappeared in the 1st days I took MB12 about 2 yrs ago. My mother takes anifungals for toenail fungus and they caused her drug-induced hepatitis.

 

[fprefect]

Rereading the list, a few things came to my mind:

-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.

@Gondwanaland, i didn't know that about st john's wort. thank you. it isn't my first choice to deal with depression. however, i haven't found anything else that doesn't cause some adverse response. magnesium and methyl b12 seem to cause more oxalate dumping than i can tolerate now. zinc causes an increased in suspected anemia. the dr suggested theanine and/or 5htp since i had an elevated Quinolinic acid to 5HIAA ratio. i could test a tiny dose of each, or maybe the 5htp only since i might have had an adverse response to theanine. the increased depression and/or panic really gets to me at times and is more difficult to deal with given the low mental clarity.

as for testing the fmn yesterday, it seems it decreased magnesium and increased oxalate dumping. i am reverting to the lower dose for now. tomorrow, i will either test a tiny dose of thiamine to get similar info or test the custom b complex i mentioned (thamine, fmn, niacin, p5p) together with magnesium.

i am too low on mental clarity to type more. i will retry tomorrow.

Ford

 

[fprefect]

i am too low on energy to reply.

i think i accidentally took too much magnesium last night. it caused heat in my hands. i suspect lower b6. i woke up repeatedly with foot cramps, which subsided a bit after some potassium. however, the potassium demand has been noticeably higher most of today. of course, taking more potassium decreased the mental clarity. it seemed like it decreased the magnesium. i suspect the increased magnesium increased my methylation and thus potassium demand, but i am open to other explanations.

anyway, i will try replying again tomorrow.

Ford

 

[fprefect]

Rereading the list, a few things came to my mind:

-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.

@Gondwanaland, sorry about the delayed response. the mental clarity has been lower recently. sorry this is long winded. i am not thinking clearly.

thank you for the info on copper supplementation. how do i tell if a doctor knows how to interpret the blood panel? i thought rbc copper deficiency was sufficient.

i took 4mcg copper (yes, mcg. ) because of low copper on my hair test and reading that oxalate can decrease copper. i think this improved the anemia and numbness in feet, but it decreased mental clarity, seemingly via decreasing magnesium. when i increased magnesium to accompany it, the mental clarity improved, but it increased oxalate circulation again, seemingly via decreased b1 and/or b6. i increased copper to 8mcg before i figured this out. i have been unable to decrease copper below 4mcg since the oxalate circulation has increased and decreasing the copper now increases the teeth sensitivity. i am still working on preparing a b complex to try and reverse this. if that doesn't work, i am considering trying antioxidants like alicec did, as a temporary measure. i made it to page 2 of the oxalate thread. yay.


@JaimeS, sorry about the delayed response. my mental clarity has been worse.

i realised i already eat squid or cuttlefish, which seems high in copper. it actually caused symptoms identical to when i had previously increased supplemental copper. unless i am missing something (very possible), it appears that the supplemental copper is not causing high copper symptoms. also, decreasing copper now increases teeth sensitivity, which Susan Owens says means an increase in oxidative stress. bummer. i was hoping i could increase copper like you said, but without the added symptoms.


i will stop here as i am not thinking clearly.

Ford

 

[fprefect]

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

@JaimeS, sorry about the long and delayed reply. i am trying to respond quickly, but i am not thinking clearly.

i didn't know about anti-serotonin antibodies. thank you. i had considered serotonin syndrome, but a reminder is good. i have anxiety, but no sweats. i haven't checked my heartrate recently, but when i was monitoring it months and/or years ago, it never jumped around. unless i am missing something, my symptoms don't suggest elevated serotonin. hmm. i will go over the list of symptoms more thoroughly again tomorrow to be more sure.

as for decreasing the st john's wort, i will quote my earlier post since i am not thinking clearly:
it isn't my first choice to deal with depression. however, i haven't found anything else that doesn't cause some adverse response. magnesium and methyl b12 seem to cause more oxalate dumping than i can tolerate now. zinc causes an increase in suspected anemia. the dr suggested theanine and/or 5htp since i had an elevated Quinolinic acid to 5HIAA ratio. i could test a tiny dose of each, or maybe the 5htp only since i might have had an adverse response to theanine. the increased depression and/or panic really gets to me at times and is more difficult to deal with given the low mental clarity.

did you mean some other way to decrease the depression that i haven't thought of? vitamin d also improved my mood, but caused palpitations.

the st john's wort bottle says to take 900mg daily. i have been taking 300mg due to the long list of side effects and interactions that i didn't want to deal with. the label on the bottle says "minimum 0.3% hypericin". the word "standardised" isn't listed.

i understand your being very hesitant. i would probably feel the same way in your shoes. i appreciate your responding despite the "leeriness". as i said, whatever i try is ultimately my responsibility and not yours or anyone else's. your approach and rationale sound very sensible. i wish i had done that years ago. in my current state, tiny changes have a significant effect. i have tried to apply the idea at a smaller scale. while the vitamin c decrease was not workable when i tried it, the changes in symptoms suggest that vitamin c is contributing greatly to my oxalate issues. thank you for the suggested approach. when i am able to, i will carry on trying small changes of things i already take.


@Gondwanaland, i tested my urine ph twice. it was between 7 to 7.5. that seems normal, which is nice. thank you for the idea. i will retest over the next 1 or 2 days at different times. i wonder if the potassium gluconate i take throughout the day is affecting this. i still haven't found a better doctor, but until then, what do you think of further tests for acidosis? eg. blood test.


i will stop here as i have run out of mental clarity.

Ford

 

[Gondwanaland]

what do you think of further tests for acidosis? eg. blood test.

I don't think you should worry about acidosis with that urine pH. You can also test your saliva with the pH strips.

 

[JaimeS]

however, i haven't found anything else that doesn't cause some adverse response.

At a 300-mg dose, you probably aren't getting much of a response at all.

the st john's wort bottle says to take 900mg daily. i have been taking 300mg due to the long list of side effects and interactions that i didn't want to deal with. the label on the bottle says "minimum 0.3% hypericin". the word "standardised" isn't listed.

The side effects are the same of any SSRI. St John's Wort is also a CYP-450 interactor, so it can screw around with other meds' uptake, which is a concern.

That 'minimum' is the same as 'standardized'. It means they extracted and added hypericin to the pill.

i could test a tiny dose of each, or maybe the 5htp only since i might have had an adverse response to theanine. the increased depression and/or panic really gets to me at times and is more difficult to deal with given the low mental clarity.

What I was saying was that I wasn't sure you need anything to elevate serotonin (which 5-HTP and St. J's Wort are at least reputed to do). Lots of things can make you feel depressed besides low serotonin. Have you had your blood and/or urine serotonin tested?

vitamin d also improved my mood, but caused palpitations.

You need to take Vitamin D with a meal, and you need to take it with a Ca/Mg/multimineral. Apparently oxalates yank out Cal-Mg, and you get heart palps with Vit D + no minerals.

I know nothing about 'oxalate dumping', this is just what I've read.

Worst comes to worst, try taking Vitamin D at a lower dose with a meal containing fats and dark leafy greens together. I have a lovely recipe for roasted root vegetables: basically, take Brussels sprouts and halve them, and slice up a bunch of other root veggies about 1/4" thick. Lay in the bottom of a roasting pan with your favorite kind of fat (olive oil, coconut oil) and a bit of broth to keep them moist. I add Italian-style herbs such as thyme, rosemary, oregano, etc. Cook at 425 F for 45 min or so (use your nose to see when they're done!)

Take with Vitamin D pill (low dose) and you will absorb it. Maybe!

Broccoli or other crucifers cooked in some fat would help, too.

whatever i try is ultimately my responsibility and not yours or anyone else's.

Thanks, ford -- I hope that this has been helpful to you. We have all been too brain-fogged to know how to proceed.

I used to use Lumosity at the recommendation of my neuropsychologist. I stopped because I was honestly too sick to focus, and the games robbed me of what little energy I had to use.

I recently went back for fun and easily beat my highest score on every game -- some after one to three tries, others right away. When you find the right stuff, your thinking does become clearer.

For me, that was phosphatidyl choline and DHA, mostly. Not fish oil -- fish oil makes me sicker, directly hitting me in my fatigue, for some reason. We've discussed it on another thread, and I'm far from the only one with this reaction.

-J

 

[fprefect]

Whether it's the supplements or not, the title of your post was worrisome.

I hope things work out for you.

@barbc56, sorry about the delayed response. i haven't been thinking clearly.

i didn't mean to cause you worry. sorry about that.

thank you. i hope you are well.

I don't think you should worry about acidosis with that urine pH. You can also test your saliva with the pH strips.

@Gondwanaland, skipping ahead for a bit, that is good to know. thank you. urine ph was 7.5 or a bit more today. i will test saliva tomorrow and then probably leave it at that.

unless i am missing something, my symptoms don't suggest elevated serotonin. hmm. i will go over the list of symptoms more thoroughly again tomorrow to be more sure.

@JaimeS, i went over the symptom list for serotonin syndrome. out of 15 symptoms, i have 1, am not sure about or sometimes have 6 (which might also be due to oxalates), don't have 5, and haven't checked the remaining 3. i will get help checking the remaining 3 symptoms over the next 1 or 2 days. if things are still unclear, i will try to get a blood (or urine?) test. thank you for bringing this up since it can be life threatening.

oddly, i seem to have increased oxalate dumping (rather than production). not sure why. i am running out of energy. i will stop here.

Ford

 

[fprefect]

i will try to keep this short since i am low on energy.


@JaimeS, my mother, a (very conservative) pediatrician, doesn't think i have serotonin syndrome after going through the symptom list i showed her. i am inclined to agree despite the diarrhea, headaches and occasional shivering, which she says is common to a lot of conditions. according to her, based on severity, i don't have the other symptoms. so i think i don't have serotonin syndrome and will probably skip the testing. yaay. i would like to hear about it if you think i should get the testing anyway. i think she isn't familiar with serotonin syndrome.


@Gondwanaland, i read that in some Indian academic paper that saliva ph can be affected by gum disease. since you said you have low vitamin k, i imagine you might have some gum issues at the moment. perhaps this means that your saliva ph might reflect the state of your gums more than acidosis right now. just fyi.

also, you may already be aware, but fructose and glucose might also cause endogenous production. the paper below is to do with rats though. i haven't seen anything in humans to do with glucose, but i think i did for glucose. just fyi also.
http://www.nature.com/icb/journal/v58/n2/abs/icb198010a.html


i will stop here as i am running out of mental clarity.

Ford

 

[Gondwanaland]

Hi Ford, thanks for the info. The link you posted to the paper said "Service unavailable", so I will try again to take a look at it later.

diarrhea, headaches and occasional shivering

Histamine intolerance, goes hand in hand with oxalates.
Shivering for me is always liver related - glucuronidation. Milk Thistle helps me despite being high oxalateas and high histamine, I take just one or two drops of a non-alcoholic Milk Thistle extract and the shivering goes away for several days.

 

[Gondwanaland]

also, you may already be aware, but fructose and glucose might also cause endogenous production.

Yes, the amount of macronutrients matter a lot - not too much but also not too little carbohydrate ingestion is crucial.

• Anemia: I always try to up my RBC and WBC with very low doses of glutamine (~250mg daily)
• Hyperinsulinemia: gluten is out of my diet
• Thyroid: I check my thyroid levels every 6 months and adjust the hormone dosage with my doctor if needed.
• Histamine/oxalates: I restrict the consumption of certain foods and take a low dose Bcomplex a couple of weeks per month, plus add fresh Mediterranean herbs to my food (these herbs are amazing).

 

[fprefect]

i am too low on mental clarity to respond, probably due to testing magnesium oxide to partially replace magnesium oil (to make my magnesium intake and thus daily oxalate production/dumping more stable). i think the magnesium oxide dose was too low.

i will try again tomorrow.

Ford

 

[fprefect]

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

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

i am still looking for another integrative/functional doctor. my dentist (who has the info) has been on leave. i hear you about doctors not always getting it right.

You have a severe gut dysbiosis. My husband is currently taking antibiotics and as a side effect his IBS-D is just gone. 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

oops. i didn't meant to imply that i had diarrhea daily. the diarrhea depends on my copper and/or magnesium intake. since it is usually yellow, i suspect it is when b1 demand gets too high and produces oxalates. i have (as of 2014) some dysbiosis. so you might be right also.

i am glad your husband's ibs-d was better on antibiotics. how are his fodmaps intolerances? i am concerned about iron and copper feeding the wrong microbes since i can't seem to decrease copper without decreasing oxalate production or increasing antioxidants first. i haven't figured out how to do either yet.

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.

i am *still* trying to make the custom b complex. this is moving soo slowly due to the low mental clarity. i might ask the sloow compounding pharmacy to make it instead. thank you for the info regarding when you take stuff.

since you are on abx, if you haven't already, i suggest going over Ken Lassesen's wordpress site on cfs and gut function. he is a cfs patient in remission whose posts are well researched. he points out why some antibiotics can cause more harm than good and what to do instead. (@JaimeS, you might find his site useful for his practical research on probiotics also.)

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).

that is good to know. thank you. i will try a small dose of glutamine if i don't see other issues i might have with it. i wonder if i should replace the magnesium oil with magnesium glycinate. however, magnesium causes more dumping and i wonder if the glycine might confuse the issue. perhaps i will hold off on the bone broth till after the b complex.

This is a chicken or egg question
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.

i will try to come up with a prioritised list of tests. perhaps addressing one of those results might help if oxalates are too difficult for me to address now. did addressing your thyroid function help with your oxalate situation? i have a thyroid test kit sitting around (possibly for reverse t3) and am wondering how high a priority i should make it (together with the usual thyroid tests) compared to an urine organic acids test.


i think my increased potassium doses have been increasing the oxalate production (since it is potassium gluconate). i guess i have to find a different form of potassium i can tolerate, whatever that might be.

i think i also need to find another form of magnesium than magnesium oxide to replace the magnesium oil. i suspect magnesium oxide might not be a good idea given my currently crappy antioxidant status (assuming Susan Owens is right about teeth sensitivity during oxalate dumps being due to oxidative stress). i am wondering if magnesium sulfate is a good idea.

i will stop here as i am running out of mental clarity.

Ford