• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

fprefect

Ford Prefect
Messages
117
moving my breakfast increased the oxalate circulation (increased tinnitus, increased pain at base of skull, decreased mental clarity, etc). i think it decreased magnesium as i am seeing more fasciculations again. i will try adding magnesium oil.

also, i am trying to get new cotton clothes to keep the allodynia manageable.

i don't have enough mental clarity to reply.

i will try again tomorrow.

Ford
 

fprefect

Ford Prefect
Messages
117
i am too low on mental clarity to reply properly.

i am still titrating the magnesium oil. after i increased it yesterday, it is unclear whether i am increasing or decreasing oxalate circulation. i think i am seeing more tinnitus and more pain in my gums, but less of a headache (suspected anemia) and less allodynia. i am confused. i think those symptoms usually increase and decrease together as oxalate circulation changes.

i will try again tomorrow.

Ford

ps. i tried replying "yesterday", but gave up due to low mental clarity.
 

fprefect

Ford Prefect
Messages
117
i tested the 4mcg astaxanthin about 4 days ago. i think it increased oxalate dumping without increasing oxalate production. the decreased mental clarity meant i couldn't reply here.

it might have caused pain in my lower back / hip, but that might have been due to sitting for 2 hours without support.

i might test 0.4mcg astaxanthin after i am more sure it didn't cause oxalate production and probably after i get a replacement mattress topper to avoid back/hip pain.

hopefully, i can respond to this thread "daily" again. my days are near 48 hours long. o_O

Ford
 

fprefect

Ford Prefect
Messages
117
my mental clarity has been worse. my days are more than 48 hours long. I have been too out of it to reply.

I have been losing weight due to having 3 meals every 48 hours. I got pain in my tailbone due to weight loss.

I have been eating the same amount to try and keep my oxalate intake the same. this doesn't make sense since I am having these meals further apart.

I don't think I can keep this up. I got lower back pain due to weaker muscles.

i dont know what added food to eat since everything has oxalate or produces oxalate. veges, nuts, rice and bread have oxalate. fruit and protein can produce oxalate. that is all the food groups! o_O

is there anything I can eat with no oxalate? or minimal oxalate production?

@Gondwanaland, any ideas? I hope you are feeling better after the antibiotics.

Ford
 

Gondwanaland

Senior Member
Messages
5,092
Perhaps you went too low with oxalate intake? I always feel worse when I remove a source of oxalate from my diet. I use the list posted at the oxalate thread as a guide. I am worried about you because you are going too low in nutrients.

I used to have a drilling pain in the tailbone as well until a couple of years ago, never could find exactly the culprit, and now it is gone.
 

JES

Senior Member
Messages
1,320
I have been losing weight due to having 3 meals every 48 hours. I got pain in my tailbone due to weight loss.

I have been eating the same amount to try and keep my oxalate intake the same. this doesn't make sense since I am having these meals further apart.

I know nothing about oxalates, but I'm pretty sure restricting your meals to 3 every 48 hours is not helping you to get better. Even Yasko writes here that eliminating all oxalates from food is not the way to go forward.

Astaxanthin is a strong antioxidant, I don't see why it would increase oxalate dumping. I think you are frankly too focused on this oxalate issue, there are hundreds of other factors at play in CFS/ME that can make us feel better or worse, not all reactions you get from a supplement are due to oxalates.
 

JES

Senior Member
Messages
1,320
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

At least part of your symptoms may arise from the long list of medications and supplements you are taking. Terbinafine, for example, has many dangerous side effects reported on wiki page, has caused deaths and doesn't seem safe to take long-term, especially not for someone with CFS/ME. Also supplements like St. John's wort have several drug interactions, St. John's wort and antidepressants like Amitriptyline for example should never be taken together.
 

Gondwanaland

Senior Member
Messages
5,092
Ford, it just occurred to me to advise you the following (not that I believe it will make a huge difference for you, but for me it does):

If you are taking anything that comes in a gel cap, do not swallow the gel cap! Chew it, swallow the content and then spit it out. Minimal amounts of gelatin readily convert into oxalate endogenously in oxalate-intolerant people like us.
 

fprefect

Ford Prefect
Messages
117
@Gondwanaland and @JES, oops. I forgot to visit this thread on sep 6 since I wasn't thinking clearly. so I just saw the messages from sep 6 onwards!

I will keep this short since I am not thinking clearly enough to reply properly.

I tried a very low dose of the custom b complex I mentioned earlier, but stopped that due to added itchiness and fasciculations. I am trying to figure out a custom multimineral so I can try the b complex again.

I tried yoghurt made from infantis, but the itchiness increased instead of decreasing.

I tried gluten free bread, and margarine and baked chicken separately to increase my calorie intake. they all seem to increase oxalate circulation / decrease mental clarity (and other symptoms). so I am still losing weight due to not eating enough. I will try some other foods.

I suspect b1 and magnesium deficiencies are are causing endogenous oxalate production. whatever I try makes these deficiencies worse. when I supplement them directly, they make other deficiencies worse. I am trying to figure out a sustainable combination of supplements.

I am open to ideas, oxalate related or otherwise. I have no problem with being completely wrong. I want to get better. at the rate I am getting worse, I am thinking of getting my will set up before I am unable to do so in future.

Ford
 

Eastman

Senior Member
Messages
526
@Gondwanaland

I just re-read the thread and saw this:

...the dark mood appeared when i added b2.

and your reply:

...roughly you need B1 with B2 because B2 lowers serotonin.

So maybe B2, in active form or otherwise, is unlikely to be the answer.

But I also realised that he never quite addressed his mercury concern.

i have mercury toxicity, but am dependent on 600mg alpha lipoic acid. i tried reducing it, but energy dropped like a stone.
 

Gondwanaland

Senior Member
Messages
5,092
Hi Ford, how are you doing?

Just recently something happened to me and I remembered your issues.

I tried Magnesium Malate and had allodynia from it. This is because it dissolves uric acid, and I have uric acid deposits in my joints. Fish Oil and B5 help (and B2, B3 and folate worsen it).

I have found some research linking thyroid problems with gout. Perhaps you could check your renal function. I am hoping myself to see a good dr. in my area before Christmas.
 

Eastman

Senior Member
Messages
526
Ford,

Are you taking selenium? I couldn't find it in your list of medicines and supplements.

Selenium is widely considered to be good for mercury detox and thyroid function.
 

fprefect

Ford Prefect
Messages
117
hi everyone. sorry about the lack of response. I have been too low on energy and mental clarity to respond properly.

@Eastman, thank you for your responses. my b2 was low according to the OAT more than a year ago. I don't think it has improved much. it is probably contributing to my current state.

I am not taking selenium. my hair test from a year ago suggested my selenium status was normal. it is probably worse now due to the oxalate circulation. I am not taking more since it seems better to decrease oxalate production.

@Gondwanaland, I seem to be thinking a bit more clearly, but I have added numbness.
.
.
one day later. scratch that. I am thinking less clearly. I thought oxalate dumping had restarted, but it has stopped again. I am still producing oxalates though.

in recent weeks, I tried b1 again. it increased oxalate dumping.
.
.
six days later. my mental clarity has been too low to respond. anyway, I tried the custom multimineral, but I think it decreased methylation. I don't know what to change in the the custom b complex and custom multimineral. so I am trying starting with 1 b vitamin instead and adding things as it causes added symptoms.

the good news is b1 increases dumping that persists even after I stop it after a day. the not so good news is it increases numbness in my feet and sensitivity in my teeth.

b3 decreases the numbness, but also decreases methylation and increases swelling in my feet. I am testing b3 and b12 together, but it doesn't look good.

the biggest issue is I am not eating enough. the infrequent b1 might have slowed my days getting longer, but I am still losing weight.

hopeful, I will figure out the combination to sustainably increase the oxalate dumping, speed up my days, eat a normal amount and stop losing weight.

I will test a smaller dose of b2 next, possibly with b1. I am open to suggestions. it seems the increased dumping is helping, but I am getting worse overall.

how are you and your husband doing? by the way, another possibility for your allodynia might be decreased methylation. people on Rich's methylation protocol noticed their allodynia improved. fish oil might increase methylation. b3 can decrease it. it seems folate, b2 and magnesium can increase or decrease it. I will look into uric acid. maybe it fits my symptoms better than methylation as an explanation.

thank you for the link. I will check it out. I would like to get a lot of tests done, but I haven't due to low mental clarity and since everything I try tends to increase oxalate circulation anyway. I had hoped your doctor was effective. I hope you find a good doctor soon.

this is too long. :rolleyes: sorry about that.

Ford

.
.
2 days later.
ps. the oxalate dumping has stopped and oxalate production has taken its place after trying to increase b3 and b12.
 

Eastman

Senior Member
Messages
526
I can't help you with oxalates as I know little about them.

However, there are two things that, to me, stand out from your posts.

You take a lot of medicines and supplements. As Gondwanaland and JES alluded to, some of these can cause problems for your liver and/or may have dangerous side effects. The liver in particular is very important in maintaining health (see for example the thread Unfolded Protein Response and A Possible Treatment for CFS if you have the mental energy, or maybe CFS/ME as a Liver issue if you don't). Some of the symptoms you are having may even be such side effects.

If I were in your position, I would seriously consider cutting some of your medicines and supplements if possible.

Which leads to the second thing: your taking alpha lipoic acid despite being mercury-toxic. As caledonia said:

... this could be the root of many (or all) of your issues.

If you are going to review the list of medicines and supplements you are taking, perhaps ALA should be a priority.
 

Eastman

Senior Member
Messages
526
Ford

I just read about the oxalate-mercury connection from an article on the Weston Price site. I don't know whether it is of use to you or whether you are already aware of it.

What is very interesting from the chemist’s point of view is the fact that oxalate binds most tightly to toxic metals such as mercury and lead. One might think this strong chelating action is beneficial, but it is quite the opposite. Once oxalate binds with mercury or lead it immediately becomes insoluble and precipitates out of the bloodstream and forms crystals in the bones and other tissues. Rather than attaching to these toxic metals and escorting them out of the body, the oxalate traps the toxic metals within the body. This is one aspect of oxalates that I believe should be more closely examined as it may explain why oxalates are associated with so many diseases. They will trap heavy metals and enhance their toxicity.

The oxalate itself is water soluble, but once it binds with a metal ion it becomes insoluble and then precipitates out to be deposited in tissue. In a comparison of the different strengths of reaction of oxalates with various metals, the metal with the highest reactivity is mercury. When oxalate reacts with mercury, even if there is only a tiny amount present, it will preferentially bind with mercury compared to calcium or other metals. The oxalate almost seems to seek out and trap toxic metals. The reactivity of oxalate with calcium and magnesium, on the other hand, is very low, and the lowest reactivity is with magnesium. One of the treatments to help people get rid of excess oxalates is to take very high doses of magnesium, or in some cases, actually give intravenous infusions of magnesium. Because it has the least solubility with oxalates magnesium will help to dissolve them, so to speak.
 

Gondwanaland

Senior Member
Messages
5,092
Ford

I just read about the oxalate-mercury connection from an article on the Weston Price site. I don't know whether it is of use to you or whether you are already aware of it.
I think oxalate concerned people overlook the role of uric acid. I have been watching out for oxalates for over a year and here am I battling with gout symptoms.